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Sunday 6th of March 2011

Today I woke up knowing how fortunate I am to still have Sammy-Joe with me . He is 22 now and am grateful to God everyday that he lives . Life is tough yes ,but all the happiness he has makes up for all the bad times , he is a bundle of joy and happiness , he makes me laugh everyday with all his little antics . I know I am blessed to have him . I also know that his life has touched the lives of many , even saving their life , because of all this awareness we have raised through the websites , facebook and support group , other children have been able to get an early diagnoses which means they have a better start in life .they can modify their homes and live without light just like SammyJoe has done , without his diagnoses SammyJoe would not have survived.with all the knowledge and wisdom from the Doctors from the National Institute of Health in Maryland Bethesda , Sammy Joe would not be alive today . Thank you to you all for helping my son reach 22
Godbless all the people that pray for him everyday and all the people that read this journal.
Maria

Sunday 23rd of Jan 2011

It has been four months since my father passed away , and life is still less than normal , we are all pretty much still grieving and I cant seem to get back to my usual self , the day my dad died part of me died also , I havent been motivated to do anything , I just take care of my mum , SammyJoe , Joe and Christian , making sure they are all ok , I also look out for my Aunty Nancy who lost my beautiful uncle 12 months ago to cancer , my dads baby brother . I can imagine my dad and his brother in heaven together teaching the angels all sorts of things about Earth and how life on earth should really be different . how people should be nicer to each other , and not forget to say hello or ask for help or give each other hugs when they need to. My dad had so many values here on earth so I can only imagine that he is a beautiful angel in heaven soaring through the clouds and watching over us , SammyJoe tells me he is in heaven with the angels and Roxy our dog. He misses my dad alot and will often speak about him.there is nothing more important on this earth than love and gratitude .
Maria

Tuesday, November 30, 2010 12:35 AM CST

I havent written in here for so long , its been two months since my father passed away and the grief has overwhelmed me , SammyJoe and Christian miss their grandfather and all of us are still trying to come to term with the loss , we havent held a support group for well over four months now only because I have been busy with all that happened in my life in the last twelve months , first we lost my beautiful Uncle Sandy to cancer then we lost my dad to heart and lung disease just ten months on , on my Uncles Birthday , two brothers together in heaven , the grief has been so overwhelming for our whole family , it feels like we will never move past it , I know I have to give myself time as my father was ahuge part of my heart and soul , he was my hero and my inspiration the only comfort I have is that he is with his younger brother Sandy now in heaven and I can only imagine what the two of them are doing , maybe playing practical jokes with other angels or sharing a beer together watching all the footy replays .
I miss my dad
Maria xx

Tuesday, September 28, 2010 11:03 PM CDT

My Beautiful father passed away on the 21 st of september my heart is broken.

Wednesday, August 25, 2010 8:41 PM CDT

Hey everyone , thought I would update this journal , its been a while as I havent had a laptop or computer thats been reliable enough , I will try and do more updates once I get a new computer . I have had so many events in the last year , our group had a great time last term holidays , we have had a Trivia Night and also a Charity Golf day was held in August , so we have been very very busy , we had a chocolate drive and are currently holding a raffle , hopefully we can continue to run the charity and support all 32 families in Australia with the funds raised.
The support groups are doing well. SammyJoe has had a few ups and downs and is currently feeling ok , so we are hoping that the beginning of spring will bring positive changes to his immune system as it has been quite low for the last three months , winter blues really set in for all us and kind of dragged us down , I had the flu six times this year even after having the flu injection , go figure ??
Any way , at present I am about to take my dad off to the hospital as his heart has been functioning at 15 percent lately so we are all worried and concerned for him as well.
please continue to pray for us as we do appreciate the prayers and well wishes
Godbless you all
Liistro family xxx

Sunday, June 6, 2010

Hi Everyone
I havent updated this in such a long time , SammyJoe hasnt been too well lately , he has had constant infections in his chest and has had UTI s to deal with also , he hasnt been the best , please pray for him and hope that he can be clear of infection soon , it really hinders his whole day . Despite all of this that goes on around him ,he is a happy boy still trying to find joy in the littlest things and simplest things , I love him to bits
M

Friday, April 23, 2010 5:04 AM CDT

Our family support group day

Monday, January 4, 2010 6:32 PM CST

Happy New Year Everyone .
Thanks to everyone for being patient with me while I sort out my many issues with the stalker and my health as well as Sammy-Joes .
I intend to take Sammy-Joe back to America this year for clinics and am in the process of organising this , so I will keep you all informed.I thinks its well overdue and I believe he would be ok to travel soon , so I am working on this now . please continue to pray for him and for me because our health has sure been the main focus of our lives right now , its a bit of a struggle.
God Bless you all and I hope you are all doing ok .
hugs and kisses
Maria xxxx

Thursday, December 17, 2009 11:41 PM CST

Just letting you all know I have been harrassed and stalked once again.I have decided to delete my space and set my facebook on private.The matter has been reported to State Police and Federal Police and the Montana Police Department. Please let me know if any of you have any incidences that could possibly be related to this matter , because we do need to report it. Also I will not be writing in this journal page , please contact me via email if you wish to be updated on Sammy-Joes progress.
Maria Liistro

Monday 23 rd of November 2009

My how the year has gone fast , we are nearly close to Christmas I need to start my Christmas Shopping this week, I havent been updating this journal as often as I would like so one of my new years resolutions will be to work more on this journal. I have loads of photos to show but have been putting them on facebook and myspace. I will add some on here also , the groups are still doing fine , all the mums and bubs are doing ok ,some are having a harder time than others , but with summer being here now that is understandable for our kids .
I am enjoying running the foundation and Sammy-Joe seems to be enjoying Art therapy , music and ot , he has been having lots of fun with , kim , Reena and Angela the carers that rotate shifts . Christian is doing well with Basketball ,under 20 s now at Whittlesea Pacers , wow how time flies , he has school exams for year 10 , other than that all is well and everyone is doing fine.
My family is the most important thing to me in the world , I love my kids and I love my family , Life is prodding along and everyday I pray to always have more time with my precious Sammy-Joe.

22ND OF SEPTEMBER OUR FRIENDS OF SAMMYJOE SUPPORT GROUP DAY

WHAT a GREAT Day we all had , we had 8 families attend and it was a wonderful day , well three hours of fun is all I can say , we had a faery face painter , a circus clown , music therapy and art therapy , it was a wonderful time , siblings , kids mums and dads got involved and had a blast , it was the best time ever ,I have uploaded all the photos on myspace and facebook so please have a look at what a great time we had.






















































10 th of August





it has been quite a long time since I updated here on this journal , I have been using facebook and twitter alot to help raise awareness , so please go to Facebook find Sammy-Joe Liistro and there you will see lots of Photos and updates , also you can google me on facebook and add us to ur friends list , I will try and update here shortly , and show all the pics that I have placed on facebook too , but if you wanna have a quick glance be sure to get facebook,its been a very interesting month for all of us .


5TH OF JULY 2009







There is a theme in life that we all should follow TRY to understand each other , if you understand each other you will be kind to each other knowing each other well never leads to hate and nearly always leads to love , there are shorter means , many of them , there is writing ,promoting social change , writing punishing injustice , writing in celebration of heroism , but always always use that base theme of understanding , It is the energy of that , that friendship begins , forgiveness starts and reality can work , it s the basis of walking in the other persons shoes that helps heal the world and makes true heros stand out.

Monday, June 29, 2009 8:19 PM CDT

on the 20th of June The Friends of Sammy-Joe Foundation held its first Dinner Dance Charity event it was a huge success.
Thank you to everyone that contributed towards this event and thank you to all our sponsors , our committee and the band ,Alias .
Thank you also to Ferraro Reception Centre Staff and Management who provided a wonderful opportunity for us and great service.
Below is a photo of our wonderful team , these people worked hard to achieve a wonderful outcome for the event , leading up to the event and also on the night .
I have a great team and am very proud of them


We are in the process of writing thank you letters and also with creating a newsletter on the event, I will keep you all posted.
We had a wonderful time with the event and we would love to share with you all the photos of the night.














I will add photos everyday for the next few weeks.
M Liistro

Sunday, May 24, 2009 4:42 AM CDT

it is now nearly less than a month for our Fundraiser.
It is very exciting and hopefully things will run smoothly.
Sammy-Joe hasnt been too well of late , and I havent been feeling the greatest either , but these are just ongoing health issues that we need to deal with.
Christian is doing well with Basketball lately.
The team won the tournament and we have another coming up soon.
I have had some issues with stalkers and people hacking into my computer , so i havent been able to write much on this journal, the constant issues with the computer have driven me a little round the bend lately , luckily i have had good friends over the net that have helped clear things up for me.
I have learnt so much in the last four months that being on the net makes u vulnerable to people who really want to hurt you.
I just hope that this person truelly thinks about the impact on Sammy-joes life before taking further steps to try and hurt us.
well please keep praying for us , God knows we need the prayers.
Maria xx

Thursday, April 30, 2009 8:39 PM CDT

Life has been very hard the last couple of weeks , things seem to be getting a little harder for us , i guess its something we have to go through right now.
Sammy-Joe hasnt been well and is still under investigations , and my health hasnt been good , so we are spending alot of time in and out of hospitals.

Tuesday, April 14, 2009 5:59 AM CDT

The last three to four months have been extremely hard on me , I am not well and need to care about myself. Sammy-Joe is not well also and we have both been dealing with medical issues since November last year.
Despite all of this the show must go on,we are holding a Fund Raiser Dinner Dance Charity night on June the 20 th at Ferrero Receptions in Campbellfield , all proceeds will go to help families with children with Trichothiodystophy , Xerodermapigmentosum and Cockayne Syndrome in Australia.We have 32 families that need our support and help.
The Tickets are 65.00 a head and will include entertainment and a three course meal please contact me on sammyjo2@bigpond.com.au to book ur seats.
M L

6th of March 2009

Sammy-Joe hasnt been very well , he has had infection after infection since his operation , he has been in a lot of pain still from his teeth and has lost 50 kilos all up since December
he has been on a lot of pain meds also , we are still investigating to see if there is anything else that could be causing all of this.
Sammy-Joe still tries to remain , happy despite all the pain he feels.
I will upload some photos soon , I have been struggling with getting better and also dealing with caring for everyone around me right now.
I have had alot of things happen lately , the wind caused damage to the Pavilion shutters , Joe had an accident at work , Christian has had anxiety and Sammy-Joe hasnt been well , the beds have all been falling apart here , and we have had some of our friends try and help as much as they can , its felt like we have been on some kind of merry go round.
I am really not sure why all this has occured , but it just seems like there is no light at the end of the tunnel.
please keep us in your prayers, i have been trying to stay positive , but sometimes its hard to.

Friday, February 13, 2009 5:42 PM CST

My Heart goes out to all the families that have lost friends and loved ones in the fires , Victoria has been in a state of mourning , life will not be the same for many, please pray for all the families, we have ahd an outpour of generosity in our community and people have shown what true Australians are about , thank you God for showing us what the true meaning of giving and being grateful is all about .
God bless all those people that have shown a hand and given with all their hearts to the fire victoms , our friends were caught up in the fires , we know what devastation feels like , this week has been a week of grieving and sorrow, I cannot describe it any other way.
Maria

Monday, February 2, 2009 5:23 PM CST

Hi to all that has kept an eye on us , we have had a very hard six weeks , with continious health issues and the extreme tempretures making life harder , and on top of all of that we had no power for 7 hours on Friday when it was almost 46 degrees which means the tempreture in our home was almost to 60 , poor Sammy-Joe struggled so much and me calling the company and begging them didnt make a difference , they didnt seem to care , I will be taking further action as it wasnt right to have that happen to Him , he has a chronic illness and to add this ontop of his existing ailments didnt make life any easier for Sammy-Joe , he has been quite ill since Friday and looks like there is no sign of improvement as yet , I was so mad at them for doing this imparticular because they said they did it because i was using too much power , i had explained to them that my house was the only house in the street to have suffered the cut , and then half an hour later to justify their actions they cut power from two of my neighbours house, this made me angrier. to think that they can do this to people that are sick and suffering is a great injustice to us as humans , I know that they have done it to others before , but they shouldve at least given some kind of warning and also their needs to be a red flag or tag on these situations with utilities for people in urgent need.
I do intend to take this on board and do something about it , not just for Sammy-Joe but for the many Victorians that suffered through the heat and for those with Chronic Conditions.
I will keep you all informed on how the situations fairs .
I hope to upload some photos also and I will let you all know when Sammy-Joe is due to have surgery once again.
The Xrays show their is a hair line gap under his two bottom teeth at the front which is causing him pain and I can only assume that this happened because of his dental surgery on the removal of his wisdom teeth , because it wasnt there in the first xray.
I am quite upset about all the bad things that keep happening to us and I am requesting prayer as now is the time that we need it , because it seems like there is never any light at the end of this tunnel.
My shingles are starting to dry up now and I am feeling a little better within my self.
Maria

Wednesday, January 21, 2009 1:15 AM CST

Sammy-Joe is still unwell and I still have the shingels , so apart from that there is really not much to report. I will be taking Sammy-Joe to the hospital tomorrow for xrays.
take care
Maria xx

Monday, January 12, 2009 5:01 PM CST

Sammy-Joe and I have been unwell for a week , I have the Shingels virus and Sammy-Joe is still having trouble with his teeth , pain , constant dribble and a tempreture , something isnt right , I think he will need to have xrays again to see what is happening in his mouth, in the mean time he is still on Oxynorm and pain killers to help ease the pain. I too have been in alot of pain and constant scratching, fever and have tried to catch up on sleep. its been pretty horrible the last few days , am wondering what we have ever done to deserve all this , and as usual am praying hard for an answer. It seems that this year hasnt really started off well for us ,am looking at the things I value with gratitude and love and trying not to wighn in self pitty , its a little hard when u are sick , so i know how poor Sammy-Joe feels , he is such a brave boy.
Life is constantly reminding us to live in the present, so basically thats what we have been doing , trying not to look to the future or hanging on to the past , just living in the now , right now isnt very happy , but we will get there , cos things are constantly changing.
THANK YOU to all of you that have sent cards , articles and letters to us , and thank you to those who pray for us and check our webpage constantly , we are grateful to you all.
Maria

Friday January 1, 2009

Sammy-Joe isnt well at all , he still has a sore mouth , he has a gum infection a sore tummy from all the pain killers and has been pretty miserable for about two days , he is on antibiotics for his infection , but his behaviour has flared up due to him feeling so sick and frustrated.
We pulled the Christmas tree down yesterday and tidied the house , but we were all pretty much drained from this last month , its pretty much taken its toll on us , the operation and Sammy-Joe not being fully recovered has been pretty exhausting , so we are praying that 2009 will be a better year for us all.
Maria
ps Happy New Year

one December morning

Sammy-Joe has a very special visitor today , he was very happy to see him .Thanks to Carol , Jerome , Stefanie ,Lisa and Guy , they organised Santa to come , it was very very exciting for Sammy-Joe.(and for us too)
it was a wonderful surprise to see Santa in our street and then in our home.












































Santa had fun in the Pavilion too with his helpers










Santa has a go on the Trampoline










Tuesday, December 9, 2008 5:02 PM CST

We had our Genetic Awareness Week night last night and I did my ten minute talk on the Freedom of Expession , I just wanted to share it with you all.

The Freedom of Expression
Slide one
Once upon a time I had a vague notion of what I was one day going to achieve, not so much an ambition, more an idea about a role I would play or the way I could do something worthwhile, I never in my wildest dreams would have foreseen that I would be an advocate for people with Disabilities or A Founder of a Charity or even a facilitator of a support network. I did not foresee that I would have a child with a rare condition.
. Having Sammy-Joe threw me into a different world a world of speech, and of dialogue, of communication something that I was never really comfortable doing as a child. I was a shy and a reserved person (you wouldn’t think that now), so public speaking was never on my list of goals, now it is something that I want to do and achieve with success.
The Freedom of Expression has given me the confidence to speak out , to talk about what my family needs , what my son needs , it has helped me to raise awareness , to be proud of what we are asking for , and to have the right to ask for opinions and different opinions for my sons health care needs ,it has helped me to talk about what is right for my sons health care , for his education needs and also for social well being.I was taught as a young child that we need to always speak the truth with passion and conviction.I was just too shy to do it back then ,now it is different
Sammy-Joes life and the life of others going through similar has given me the strength to speak out.This part of the Charter has given me the right to speak out.
The Freedom of Expression has helped me to reach out to people in the community, to help seek support for my son and for asking for inclusive environments, not just for him , but for all that are affected by rare illnesses.
I believe I have already filled some of this potential, but I know there is a lot more I can do , alot more we can all do .
Remember health professionals are armed with resources, theories medical expertise and educated to help us, we are also here and armed with our experiences and what we live through everyday and we have the right to voice it to express it .

As A mother and Carer of a young adult with a degenerative genetic condition and with exceptionally high needs , The Freedom of Expression in the health care setting means the following to me
• The Freedom to seek quality health care
• The Freedom to express the needs of my son as a health Consumer
• The Freedom to seek best practice in health care
• The freedom to comment on the treatment of my son and Participate in his health care plans
• To be informed on all aspects of his health care
• For his health care to be provided on time and in time
• For there to be regular and open communication between the family and health care providers
• The Freedom to seek solutions to problems in health care diagnoses and assessment even when there seems to be no obvious answers
• The freedom to seek alternative opinions and The Freedom to do my best to provide a good quality of life for my son.


Slide 2
We need to all work in partnership to be able to achieve all of this.
The Freedom of Expression has helped me make decisions by speaking out, by asking for second opinions, by having the right to be involved in my son’s health care needs. By asking for a diagnoses , it took 13 years to get one for Sammy-Joe , but I never gave up , I would constantly seek more information.I tried every avenue to find an answer and if I never voiced this or expressed this by using this part of the Charter , I would probably still not know what his illness was, I am glad that I FOUND the strength and the courage to do it .
The Freedom of expression helps us in many ways it gives us many rights , it gave me the strength and
the right to receive information, by being directly involved with decisions to do with health, education and his social well being.
In pursuing these aims I have conducted the Following
• Raised Awareness by going to the media , by posting in public forums and setting up public appeals
• Put a support group and network together by finding other families in similar circumstances
• Produced a webpage and online journal
• Formed a Network online and in writing
• Received information about the condition from all over the world
• Travelled to another country to receive a formal diagnoses and second opinion on my sons condition
• Posted questions through the media and also through to the health system
• Taken our cause to government and raised awareness through parliament
• Founded a Charity organisation in my sons name called The Friends of Sammy-Joe Foundation

Slide 3
Sammy-Joe has trouble speaking for himself at times , but can communicate what he wants and what he believes him, he has always been included in decisions and I have always spoken to him about what has been happening to him with his health care , he has also voiced and expressed what he wants and desires for his health care needs. He has expressed to me “MUMMY SAVE MY LIFE”’ “”mummy help me be better”’(what more can a mother hear to drive her to fulfil the needs of her child.)
I have spent the last five years not only accepting my sons condition and dealing with it every single day , I have also spent the last five years advocating those needs because of The Freedom of Expression .
The Hardest thing about having a child with a disability or a rare genetic illness is the isolation that you feel even when you are in a crowded room, so The Freedom of Expression has allowed me to have a strong voice and enabled me to speak out not only for my son but for others going through the same .
I believe the differences you make that are lasting in peoples lives are the little ones that count the most. Make a difference by allowing the Freedom of Expression by helping everyday to provide inclusive environments , this should also be in the health care system.

Slide 4 and Slide 5
None of us can turn back the clock , why then do we spend so much time living in the past , let’s be the blueprint of change , let’s all live by the Charter and do what’s right for every person that needs a diagnoses that needs their healthcare , educational and social needs met.
Lets live by the Human Rights Charter every day and prove that we are living with the blueprint of change.Become the blueprint for change, We need to encourage every person to live within the charter.
Maria Liistro

ps Sammy-Joe is recoverying well , he still is in a lot of pain but is taking pain medication to help him through.
I will keep you posted,and I will post some photos in also.






Our Pizza Night with most of the mums in the support group that I run


sammy-Joes pink pirate pyjamas



The Carers Forum where I was one of the guest speakers

Friday, December 5, 2008 3:33 PM CST

Surgery went well , Sammy-Joe was a star as usual , he didnt complain or freak out he was so good and wanted to go into the hospital bed , he was fantastic , I was more nervous than him.
Surgery took two hours they removed 6 teeth which included the wisdom teeth and then they also cleaned his teeth and looked for cavities took internal xrays , he did very well, I on the other hand was so nervous waiting for him in the waiting area , once it was all done , he was swollen and very tired in pain , but he managed very well , he was kept on pain killers and we stayed in an isolated ward overnight and in the dark , the Austin hospital was great with they way they took care of it all , I think we will probably do everything there from now on. the transition was smooth and the doctors , nurses and pcas were all great with us , it was a good stay , no dramas at all.
Sammy-Joe was well behaved once he was up and about and was keen to come home , we got home Friday afternoon to find that daddy had painted the wall and also put the Christmas tree up for Sammy-Joe in his room , Sammy-Joe was very very happy , he has a balloon face swelling and I know this will take some time and also the pain is still quite strong , but otherwise he is doing very well , considering , he puts us all to shame with his high pain threshold , we are all big sooks compared to him , what are star you are SAMMY-JOE ,, AMAZING AND REMARKABLE !!

Tuesday, December 2, 2008 12:51 AM CST

Sammy-Joe has been very good these last few days , he knows he will have surgery on Thursday , he isnt looking forward to it , and has been anticipating it , he is very nervous about it all , I am too.
I havent been well at all for a whole week , I have had flu like symptoms , headaches and aches and pains all over.
The end of this year has taken its toll on me. I hope and pray I am strong enough to help Sammy-Joe through his recovery , then I will probably need some rest. Its been a hard year with alot of excitement , alot of stress and some losses , we have also had some wonderful gains , such as the Pavilion ,the start of the Charity and also the support network , no wonder I am exhausted!!
I wont be online for about a week , so I am hoping I only have good things to report when I get back from the hospital with Sammy-Joe , please keep us in your prayers.
hugs
Maria

Friday 21 of November 2008

Sammy-Joe is doing art therapy right now , so I thought I would update the journal , he seems to enjoy Art with Susan , and although he wanders around the Pavilion he actually interacts with her and has a hand at some art work , which is more than I anticipated from him , he loves to listen to Susan sing and he dresses up , at the same time trying to see if she will join in with his Pirate costumes and dinosour games , During the session Sammy-Joe Hovers around her watching intently every move she makes ,so far he has had six art sessions with her and I believe he looks forward to seeing her as he tries to prepare things the night before the session and he says "how exciting , how exciting " this has shown me that when Sammy-Joe is well , we need to really look into setting up a routine of play and therapists , he has also asked me about the support group , so once he has his surgery and is recovered we will look into organising some group sessions on the holidays , with the clown , possible puppet show and some activities , I have been thinking of a little hobby farm as well , I believe the children will enjoy themselves.
The Parents support group is having a pizza night next wednesday , so I will take some photos and post them here , it will be a fun night as we are meeting at the Pizza shop , there will be 25 of us , it will be the first time I actually have all the parents together in one go , I am looking forward to it.

Maria

Monday, November 17, 2008 7:13 PM CST

thanks to everyone that wished me a happy birthday , I got the best present from my boys , Sammy-Joe and Christian sang to me Happy Birthday together and Sammy-Joe didnt get a word wrong, love does make you make the most extraodinary changes and can make you achieve the impossible.
thank you to my beautiful boys for making my day.
Maria

Wednesday 12th of November

Sammy-Joe will be having surgery on the 4th of December for his impacted wisdom teeth and extra teeth to be removed.
I hope it will go well , he was such a good boy today at the hospital , he had xrays re done and all blood tests , he was very well behaved , what a star!!
Maria


Friday November 7th
here are the photos finally
Thanks to Lou and Sylvio from Trimont
15-23 The Gateway Broadmeadows 3047
93595777
for donating time and Materials to this wonderful project .





thanks Lou for your kind donation of Labour for the wall , Sammy-Joe loves it and so do we ,it has added more privacy now in the study and Lounge , thank you for all the hard work you put in to building it .




you built it in a day , Sammy-Joe was very excited it to watch it go up



Thursday, November 6, 2008 2:28 PM CST


Happy Birthday Christian !! Christians 16 today , I will take lots of photos and put them on tomorrow for everyone to see .
Sammy-Joe still isnt well , he has lost more weight and is in alot of pain still with his mouth and teeth .
We have had a busy week , Our friend Lou has been busy working on the wall to divide my office and Lounge room , his nice boss Sylvio donated all the materials and Lou donated his time , it took him a day and he did a great job , I will also include these photos , Sammy-Joe got to use the nail gun and was all hugs for Lou once he had finished the wall. it looks good and has given our house a cosier feel.
Sammy-Joe has been a little quiet this week , he got a little light exposed when going to the hospital this week , we need to go again next week , so I am guessing that we will have some days full of vomit and all the after affect of light exposure , he also sleeps alot when this happens to him and some blisters all over his body .
I have been busy raising awareness again and will continue on this mission for a long time , I will never give up on finding other families and I am certain there are so many children out there going undiagnosed.
Thank you to all the beautiful people that have helped make life easier to us , especially this week a big thank you to Lou his family and Sylvio , we are eternally grateful to you , look out for all the photos this week
Christian absolutely hates photos of himself , but I was able to get some of him and his friends , he said I can post them in here only this once ,,lol , he makes me laugh SWEET 16 and just a gorgeous brother to Sammy-Joe .
Maria xx

Friday, October 24, 2008 4:28 PM CDT

Sammy-Joe has had a UTI , ear and throut infection for over two weeks , he finally started to feel better and today he enjoyed having fun as a Pirate , he dressed up and went around the house looking for treasure .He seems to be a little less agitated now and has been a lot better with his behaviour , the screaming seems less and the destructive behaviour seems to have disappeared . Alot of that behviour usually is from being so irritable and unwell.
Maria

Saturday, October 18, 2008 2:12 PM CDT

Sammy-joe hasnt been well with the onset of summer , also we had some bad news this week with my Uncle passing away ,my dads brother Con , so Sammy-Joe has been feeling the effect of all the grief surrounding him .
Its been a hard week.

Wednesday, October 8, 2008 3:45 PM CDT

Sammy-Joe hasnt been very well at all , he has a lot of pain still in his teeth , still no sign of the surgery being any closer , looks like it may happen in December for Sammy-Joe .
Also he is constipated from all the panadiene forte he is on and has lost ten kilos in two months , the dietician is a little concerned and wants me to increase peg feeding again .
I too am concerned .
I am trying to also juggle when we will have our next group , I will call all the parents soon and see what time and day suits them all .
this time it may be on a Friday night and I may have a puppet show come out , I have been looking into different ideas for the kids .We have had good feedback and Sammy-Joe always asks me when our next group will be , it shows me he needs that connection to the community , I am so happy that we can finally make this all happen for him and the other children of our group , its a blessing that people are hearing us now and really putting themselves in our shoes . Thanks to Delfin and Naturform , the Community has really opened up to the needs of our family and of course our precious son , what a hard life he has had and now at least he and Christian can start having some fun .
Life wasnt meant to be just about working hard and feeling sick , its meant to also be enjoyed , we have all struggled as a family the last 19 years , at least now Sammy-Joe and us can start to experience a little joy .
Maria
below is an email from the President of The Friends of Sammy-Joe Foundation


Hi all

Maria and I attended the Hume City Council grant night on Wednesday 1st. As you all know the grant is for $700 to go towards the support group. YEAHHHHH!!!!

It was a fantastic night and Maria was working the crowd, (and she thinks she knows nobody). Maria knew two of the councilors, a Delfin community worker and a Local Criagieburn advocate, Dennis (your brother in law John, lovely man).

The two councilors were thrilled to fund the Friends of Sammy-Joe foundation and were looking forward to catching up with Maria, they were all in awe of Maria and her achievements. It once again highlighted to me the reason why we are on this committee and the fantastic cause we are working towards and we should not lose sight of that. Maria has gathered some strong supporters, and I am sure we will have more come on board.

Well done Maria you really are an inspiration to us all.

***********************************************************************
Carmen Cappello

1st of OCTOBER HUME AWARDS

thank you to all the Councillors and representatives of HUME CITY COUNCIL who helped us in getting a small and first time grant towards running the Friends of Sammy-Joe Supported Network
thank you so much












CNR DREW JESSOP and Anne Jessop of Delfin and Me


cnr Moira White and ME


Carmen Cappello President of The Friends of Sammy-Joe Foundation and ME




Sammy-Joe dressed as a Pirate with Art Therapist Susan Begg



September 25th 2008





Sammy-Joe loves cuddles and kisses , he loves affection and really is very social , he enjoys people and loves to really show them how he feels , he is an inspiration to many and the best cuddler in town !!













We got to go to the Melbourne Show for the first time in ten years thanks to Carers Links North /Victoria and Marti , thanks Marti , we had fun , Christian was wrapped and Sammy-Joe got to pet the animals in the animal enclosure , he loved all the coloured lights the noise and the showbags , he was a little frightened of the fire works , he talked about it all night .
here are some photos , I forgot my camera silly me , but took some on my phone , thanks to John for uploading these for me , I can now show you all .








thanks to Sami Jay ,and all the staff at the Royal Melbourne Show grounds you guys are sensational !!

and here are some more photos of our group day , Sammy-Joe has had a wonderful happy week this week , thank you to everyone that has made this all possible .













Friday, September 26, 2008



On the 25th of September we were able to run our parent supported playgroup for the friends of Sammy-Joe Foundation and the Craigieburn Support Group Network .
We had loads of fun , we had a clown , a face painter , bubble blowers , balloons and good food .
the families connected together and also it was a way of the siblings and young carers in the family to connect also .
Here are some photos to show the happy and fun two hours we had , thanks to Delfin , Naurform and the IAN POTTER FOUNDATION for making this possible .




























As you can see everyone had lots of fun and we would like to extend the group to creating a dads group , we have lots of new ideas and are keen to keep the group running .
thanks to everyone that made this possible for us .
Maria and Joe , Sammy-Joe and Christian

Tuesday, September 23, 2008 6:15 PM CDT

Sammy-Joe has been very calm lately , he has been busy with his computer , DVDS and reading books , he also has been enjoying drawing and doing some puzzles , he is a little under the weather again with a UTI and a cold , but otherwise seems fine , he is looking forward to the support group gathering in the Pavilion on Thursday when the clown and face painter will be here .
How exciting for him !!Thanks to the Ian Potter Foundation we are able to run our groups with lots of activities and fun .
I wlll be taking photos and posting them in to show everyone what we are up to . I havent posted photos for a while and am looking forward to sharing this with everyone.
Maria xxx

Friday, September 19, 2008 2:51 AM CDT

Sammy-Joe has had a quiet day playing in the ball pool and jumping on the trampoline . We are going to run our Friends of Sammy-Joe Support Network group on Thursday with the other parents and children , it will be a fun day , I will try and take some photos of he day .
Maria

Thursday, September 11, 2008 4:57 PM CDT

Around here it would be about 6 pm in winter months and 9 pm in summer months , sometimes things are not open , yes some household lights bother him and also shopping centre lights do also , he burns with these , we have had our house completely modified , we have lights with UV protective casings on them , we also have metal shutters , tinted windows and no UV gets in at all , this is why his home is where he feels safest .
it is difficult for other people to understand this condition , Sammy-Joe has been not well for the last couple of days because of the small amount of light exposure he received in those short trips , I think only people that suffer similar conditions can truelly understand what he is going through , or people that have ever experienced sun stroke , this is what his condition can do to him even on the gloomiest of days .
I know it is difficult to understand , but I also know there are people that read this Journal everyday and leave messages for us that feel for Sammy-Joe and try hard to understand it , I am blessed by having these people in our lives because it shows true strength of spirit to give compassion and empathy , thank you to you all that keep praying and keep giving us beautiful messages of love hope and understanding
Maria

Tuesday, September 9, 2008 10:25 PM CDT

Sammy-Joe ventured out with me and Reena yesterday we went to the Library , he chose his book and video and then we head straight home again , of course he was protected by tinted windows in the car,suncream and hat and jackets , layers of clothes , but still he managed to get burnt even on a overcast day.
Today he has been sleeping it off for the last three hours , just snoozing in the big armchair rocker .He has been very tired .
Summer is coming in a big way so I dont know how he will manage to do the Library trip , but he will have to maybe try at night .
Maria

Sunday, September 7, 2008 3:54 PM CDT

Sammy-Joe has met with his Autism Plus worker , the plan is that she will work with him for four mornings a week and then eventually enable him to move through the community where he can go shopping with her and also go to the Library , although I am happy about this I think its happened a bit late in the seasons as now the UV will be getting higher everyday , I am not sure if this will work for him ,but I am willing to give it a try and make it work as much as it can for him .
This is the beginning of a new chapter for Sammy-Joe and he is feeling well enough to try , I am fearful of the light exposure that he will be receiving and I have voiced all my concerns on this , lets see how it works for him and if I see any signs of regression I will be pulling the plug on this new agreement , but first I must try it out for Sammy-Joes sake and sanity , he has developed and grown in many areas of his life and I know this is because he has been protected from the light and we have been living in that way for a long time now , but he does want to see the world and he does want to gain some independence , so what ever Sammy-Joe wants to try , we are willing to try it out for him and with him .
please pray that it will only benefit for him and not give him any adverse effects from the light .
Maria

Saturday, August 30, 2008

Hi everyone
Sorry for the lack of updates , I have been busy with Sammy-Joe lately and also with running the charity .In the middle of organising some fund raising events and also looking at our fundraising calender for next year .
Sammy-Joe has been living and coping with his pain the only thing that seems to take the edge off the pain are panadiene forte , but I am not sure how much longer these will keep working for him.I also needed to take care of my other gorgeous boy Christian .
Christian was so sick for a whole week and had the week off school.He had high tempretures
He will have a lot to catch up on this week
he is in year nine , alot of children were sick thou so he wasnt the only one , Joe was sick also for two whole days with the flu , at the moment I seem the stronger one with my immunity , although , I have felt washed out and tired of late .
Well soon spring will be upon us and I am hopeing that things will get better for Sammy-Joe , I know summer is harder for him with the UV , but on the plus side at least the warm nights make it easier for us to take him to places , like the beach , Luna park , the Casino , the city , thats when all the night fun begins for him and also the Zoo , his favorite place .
I know summer is hard , but winter is hard too because of the cold , so it is a difficult situation for him , but the Pavilion has made life a lot easier and different , I will upload new photos when I get a chance , thanks to everyone that has been patiently waiting for an update from me .
I have also taken over the reins of the Craigieburn Support group so I cant wait for this to start also , we have had one session so far with two parents , also I want to combine my other support group with this one this way the parents can all meet and mingle .
At present I am running out of time during the day as I havent had Carers when I have needed them , so have had to put my life on hold for some days , this is also a big issue for us , finding Carers that can work with Sammy-Joe and all of his challenges , I am still looking into trying to solve this ongoing problem .
I have also been raising alot of awareness through news letters and forums and also some other organisations that I am involved in to do with support groups for people with disabilities .
Well for now , please take care until my next update , I hope I have some more exciting news to share , at present things are pretty busy and full on , with some positives , so lets pray that things keep improving and that things happen fast for Sammy-Joe through this Adult hospital system.

Maria

Monday, August 18, 2008 5:03 PM CDT

Sammy-Joe is no better , still in a lot of pain and we are no way closer to being seen to have his surgery , We spent the whole day at the hospital yesterday and before they do the surgery they want to run a series of blood tests and other tests before they do surgery . So looks like we will have to wait until these are all done before even attempting to do surgery which means a longer wait , in the meantime Sammy-Joe has to just be on pain killers all the time and hope that the pain will settle a bit . Looks like also once all the tests are done if the hospital isnt comfortable in doing the procedure they will put us in a different hospital , where there are wards incase something goes wrong with procedure , which I wondered why this wasnt suggested in the first place , the Adult system is much slower and transition from Childrens hospital to Adult hospital sure is different, I know they are being cautious , but it isnt helping Sammy-Joe with his pain , I will keep you all informed with what happens next , also Christian has been running a fever for two days and isnt well , looks like he has the flu .
Maria

Thursday, August 14, 2008 4:47 PM CDT

Sammy-Joe is miserable , he is in pain and is on the strongest pain killers up to 8 a day , he cant bear the pain otherwise , but still even with the pain killers as soon as it wears off he starts to feel the agony , he will be seen on Monday by the surgeon and anaesthetic guy , but this is just the pre surgery appointment , and then we will know after that the date of surgery .
I am going to write to the Health minister as this is truelly a problem in Victoria , the health system is surely sucking right now , I feel so sorry for those people that a in long waiting lists waiting for surgery .
What is happening to our country , we arent even a third world country and seems like our system has reached these levels where people a laying in stretchers and dying in waiting bays , its terrible I am so disappointed and disheartened by our so called system , the problem is people too easily blame our system , but its the people behind the system that need to change .
thanks for listening and thanks for caring , thanks for writing to us , we really do appreciate all the letters and messages .
Maria xxx

Sunday, August 10, 2008 2:56 PM CDT

its been a very difficult time for Sammy-Joe the last 6 months still waiting on the medical dental list to have his surgery , its sad how sitting on the public waiting list is and how much agony these kids have to go through before anything is done about it , its quite distressing and appalling really .
I have been calling the hospital and will be calling again today , I ve had enough of the system , because the system is really governed by the people behind it .
I heard a story how a dental nurse didnt have to wait to be seen because she was a nurse , so what happens to the ordinary folk like Sammy-Joe that are just sitting in ques , its quite upsetting really to think that your credentials have an affect in where we are placed in society .
Maria

Friday, August 8, 2008 7:23 PM CDT

Always Always REMEMBER THAT
voices are heard, change is possible, and a difference can be made in people through the power of words.

Revealing painful episodes in our life is a difficult process. Writing about the adversities that we face and have faced has definitely been upsetting, but it has also a cathartic process that none of the Family, Joe , Christian and myself and of course Sammy-Joe would give back. we are able to finally validate our pain,through this journal, through newsletters , share it with our peers, and realize that we are not alone in our struggles.

PLEASE PLEASE FOR THOSE WHO WRITE TO US , FOR THOSE WHO READ THIS JOURNAL AND CHECK IN ON US , PLEASE UNDERSTAND THAT , BECAUSE IT HAS CHANGED OUR LIVES FOREVER , SO PLEASE KEEP CHECKING , PLEASE KEEP WRITING AND PLEASE KEEP PRAYING HARD .
WE LOVE YOU
Maria and Family

Tuesday, August 5, 2008 10:19 PM CDT

We have had the saddest News Uncle Vince Passed away , he was a beautiful generous kind person that cared for many people , his heart was kind , caring and gving , he helped us through so many things and we will miss him dearly .
Please pray for those left behind , we are struggling to accept what has happened .
We can only find solace and comfort in the fact that Heaven has gained a beautiful Angel , I can just see him now in Heaven helping all those in need up there and surrounded by beautiful angels , mostly children , the last time I saw Uncle Vince was in March and he was giving away icecreams to children , just so he could see them smile .
Thank you Uncle Vince for helping my sons smile too and for being a beautiful person with a big heart .
We will miss you ,but never ever forget you
Maria Liistro

Monday, July 28, 2008 8:01 PM CDT

please help raise Awareness for Childhood Cancer today

please help raise awareness
AJs Dad
AJsspace - www.carepages.com
AJs Blog - http://curechildhoodcancer.blogspot.com/
Cure Childhood Cancer - http://www.thepetitionsite.com/1/CureChildhoodCancer

go to these links and please help raise funds and awareness for all the children that are dealing with Childhood cancer

hugs and Love
Maria

OUR story that was published in the newsletter

Maria’s Story
My son Sammy-Joe has Trichothiodystrophy and was diagnosed after 13 difficult years. He is now 19 years old. He was born by emergency caesarean section at 38 weeks. He was smaller than expected for a child at that age, and his head was 26maller compared to the norm. He was born with curly, brittle hair, short and sparse, small eyes, dry skin and very floppy. He weighed 5lb 2oz and lost a dramatic amount of weight in the first two days of his life.
He lost all of his hair after having a temperature, while having a bath in the hospital. He had difficulties suckling, and failure to thrive. Because of his poor immunity, he has had many stays in hospital throughout his life undergoing extensive tests, Gammaglobulin treatment, surgery and rehydration. He has lactose intolerance, ataxia, speech delay, autistic characteristics, poor weight gain and stunted growth. Certain sounds and lights affect him, triggering him to scream as if in pain, which I now believe at times truly hurts him.

He is photosensitive to the light and refuses to wear short sleeves due to the sun hurting his skin. For years I couldn't understand why he wanted to wear long sleeves on a 40 degree Celsius day. Now I know why.....he cannot be exposed to too much sunlight, he is quite fragile and sometimes unsteady on his feet, and often faints when he is unwell. Aside from all the trials and battles in his life, he is a happy child that has a passion for books, videos, nursery rhymes, the Muppets, animals, stuffed toys and James Hird from the Bombers. My sister in-law once said, "Imagine if everyone had the same passion for things, or loved the same way Sammy-Joe does, this world would be a better place".

I have often been asked what does the future hold for my son's life, and I would be lying if I said it doesn't scare me. In fact it scares me so much my response is always "nobody really knows". The other children with TTD that I am in contact with are all younger than him, and because this disorder is so rare, I have only been able to find 30 other families in Australia, 56 world-wide.
In 2003 we travelled to America to meet up with scientists and doctors from NIH and MAYO Clinic and UCSF Hospitals which helped change the quality of his life. Although not cured, his quality of life has greatly changed.
Sammy-Joe is my pride and joy, my heart and soul, and my whole reason for living. He is truly a miracle child and a survivor, an inspiration to his family and friends. His brother Christian adores him, and he is the apple of his Dad's eye. We love both our children and have taught them to be very proud and stand tall, despite all the challenges that life brings us.
Christian is an equally amazing young brother who cares for his older brother, but now has had to take on the big brother role. Christian finds life challenging when having to explain that his older brother is really like a younger brother, because Sammy-Joe cannot do the regular things that other nineteen year olds can. Christian also struggles to understand and cope with the grief that he feels when he has thoughts of losing his brother through the illness called Trichothiodystrophy .

Sammy-Joe and Christian constantly amaze us with their incredible love and happiness for being together, and for their sheer love of life.
Like all parents, we want everything for both our children and thinking ahead about what the future may, or may not hold, makes us strengthen our determination to see that our children have every opportunity and experience that they both deserve.
Sammy-Joe's diagnosis has forced us to re-evaluate our entire lives and the way we live. We surround ourselves with family and friends who understand and are sensitive to our situation. We decided as a family that whilst Sammy-Joe’s diagnosis is devastating and we have no control over it and the final outcome, we do have control over the way we manage our situation and the way we choose to give Sammy-Joe a quality of life that best suits him. The simple things in life really do mean much more, and spending quality time with our sons means so much more to us. We live day by day and enjoy every moment with our precious boys.
I'd like to tell you all that as long as we are blessed with Sammy-Joe and Christian we will have all that we need. Everything else seems so unimportant. Sammy-Joe will always touch hearts, and even change lives with his smile. Christian will always be a kind hearted gentle soul that has been touched by having a brother with a chronic illness. My family means the world to me. I will go to any lengths to keep them safe, happy, protected and loved. I just want us to be a happy family. Having Sammy-Joe and Christian has taught me many things; it’s taught me patience, tolerance strength and unconditional love.
Having organisations like Carers Links North, Young Carers Victoria, Melbourne City Mission, and everyone that have so generously stretched out a hand, has been life changing. It’s shown me that people are out there when you call out for help. Without these organisations life would have been very very hard.

The Pavilion that is being built by Delfin and Naturform will be a safe area for Sammy-Joe to play in with his brother. It is something that will change all of our lives. We are all grateful and believe that we have been blessed with a Miracle.

Maria











Joe's Story
It has been difficult accepting that my eldest son has a condition so
rare that the sun could kill him. My other boy Christian has been my
strength as well, watching them both grow as individuals has been
something that a father handles silently, with pride or sadness, in
my case l have to deal with both. I have been going through
depression and a lot of it has been grief over not accepting what my
son has to go through, also watching Christian grow and be basically
like an only child because Sammy-Joe cannot keep up with his younger
brother that has now taken on the older brother role.

My silent wishes have been that both my sons have a `normal life'.
Sometimes l find it difficult to express what l am truly feeling.
Being a father, a husband, a carer has helped me to grow in so many
ways. It hasn't been an easy task, but it has been a journey that l
would do all over again if l had to. Despite the grief that l have
been feeling l cannot imagine my life without my family.
I admire my wife for all that she has tried to achieve and l am very
proud of both my boys. There is no other place l would rather be
than with them and growing old beside them.

We have been faced with so many challenges and also so many
disappointments. We have experienced hardship and pain and also so
many little joys. Our recent joy and wish has been knowing that
there are organisations out there such as Young Carers Victoria,
Melbourne City Mission, CarerLinks North, Very Special Kids, The
Lions Club and now Delfin and Naturform. These organisations have so
generously helped us in many ways.

Having these organisations step in has transformed all the despair
into hope. The
Young Carers group has helped my son Christian deal with so many
challenges about his brother. It has helped him to feel important as
a young carer. As his father l have been watching the change in
Christian. He has changed and matured into a nice young man. He has
faced being the sibling of a child with a disability head on and with
strength. He has taught me to be strong. To watch a young brother
protect, care and love his brother with a disability and not see him
as any different, has taught me to accept. Apart from my wife,
Christian has been my mentor.

I love both my boys and all l want is for them both to have a
comfortable and happy life. Delfin and Naturform have helped us to
achieve our goal. They have joined forces to build a pavilion
attached to our house which will be solar protected for Sammy-Joe.
The pavilion will change us as a family. We can socialise within a
safe environment for Sammy-Joe and spend more time doing things as a
family and Sammy-Joe and Christian will be able to spend quality time
together.
We are grateful to everyone that has helped us to achieve our
dreams.

Thank you
Joe
Christian’s Story – 15

My name is Christian and my brother’s name is Sammy-Joe.
Sammy-Joe has an illness, a disability and sometimes l am the only one that understands him. I don’t like people to tease him, or to say things about him. I try to protect him from that. I have now become the big brother. For only 5 years l was the younger brother and l looked to my brother for help.

Sometimes l would wonder why he couldn’t talk, or do the things that others could do.
I remember seeing him in hospital a lot of the time. It upsets me to see this and l couldn’t understand why he was always so sick. When he turned 13, l remember my parents crying because they were told that Sammy-Joe could die. I hated hearing that and l didn’t believe it either because l knew that Sammy-Joe was strong and tough; he sometimes wrestles me to the ground.

I know that Sammy-Joe can never do the things that l can, but sometimes l wish l could just stay home from school and look after him. I take care of him sometimes during the night when my parents are too tired, or don’t hear him wake up. I know that l have to, l feel that l have to.

My favourite thing to do is to play basketball, it’s my favourite sport. I like it when Sammy-Joe can watch me play outside in the dark. Sometimes we would play on the trampoline together at night, now it’s too hard because Sammy-Joe is like a four year old with his mind. Sometimes he throws tantrums and sometimes he is too sick to do anything. It’s been hard, but l like being with my family. Having the structure is going to be fun because Sammy-Joe won’t be so frustrated, there will be more room to play and he can spend some time with me in there.

Marti has come to be my friend and he has made sure that l have had some things for me because sometimes l have missed out on things because my parents couldn’t afford things. It’s been good having other people that understand my situation.

Christian

Saturday the 19th of July 2008

Sammy-Joe has had a lot of pain in his teeth lately , we havent had much luck with the hospital either getting him in sooner , its impossible , I am not sure where to go from here .
please pray that the pain goes away , his impacted wisdom teeth are the reason also for his frustrations lately and him lashing out at times .
Maria

Friday July 18th 2008

Sammy-Joe has a facebook and so do I , we also have a My space if you would like to add us , just send a friends request .


Thursday July 17th 2008


Sammy-Joe has a favorite toy , its name is Simba , he loves it , its a tiger and he loves tigers right now , tigers and clowns are his favorite at the moment




oh he loves his grandmothers too , this is his next favorite thing , he loves both my mum and my mother inlaw to bits ,


he convinced my mum to go on the trampoline , now he wants to work on nonna Pina too , Sammy-Joe has an uncanny way of releasing your inner child ,,lol,,









Reena and Sammy-Joe having some fun in our backyard .










The Pavilion is that big it also shades my backyard , its lovely
here is a photo of it from my back fence








Sammy-Joe had some fun on a low uv day for about 20 minutes , the longest he has spent outside in ages , he played in the basketball green area which he calls"" the Park ""he said he wants to have a picnic in the park oneday , lucky its winter and the UV is low , but still he got burnt and when he started to feel the pain , he ventured back in the Pavilion and the shutters went down .

here are some photos ,



Wednesday, July 16,2008


Sammy-Joe playing with his brother , his cousins Melanie and Johnny , they love the trampoline , the Pavilion has helped Sammy-Joe be amongst everyone socialising , its been fantastic .



Sammy-Joe loves the Trampoline , he plays with his brother and Christians friends too , he is really enjoying it .


he even convinced my mum to go in it also , its so funny ,,lol,,



look at that innocent face , its the kind that says "who me?"



Sammy-Joe has over 300 cards and postcards now , he is very happy with every single one , he loves spreading them out on the lounge room rug and looking at all the pictures , please keep sending them from all over the world , he has some from London , France , Italy , America , he loves them !!
thank you to Luisa for sending the latest ones from Australia Zoo , he loves them .



today Sammy-Joe convinced me to get in the ball pool with him , he was so funny , he loved it , it was quite relaxing and I couldnt get out of it for a while ,, we had fun !!







we played in it for about 30 minutes , it was so relaxing for him , he still has a lot of pain with his teeth so it was good to see him smile

Friday, July 11, 2008 10:22 PM CDT

Hi Everyone
sorry for the lack of updates , Sammy-Joe hasnt had a painfree two weeks , he has impacted wisdom teeth that need to come out and is sitting on the public waiting list , we are hoping and praying that he will move up the list quicker , at the moment he is on strong pain killers and is trying to manage with the pain ,he has lost a little bit of weight also , when he has a good day , he will spend time jumping on the trampoline and playing in the ball pool , he also loves the treadmill and bike , having the Pavilion has helped him in many ways , now he just has to cope with the pain , another thing for him to deal with , Sammy-Joe has never really had a break from being without pain and its very sad that once one thing is over another thing begins for him , to do with pain .
please keep praying for my son , he needs lots of prayers
Also I have the lastest Newsletter for The Friends of Sammy-Joe Foundation , if you would like me to send it to you , please email me at sammyjo2@bigpond.com.au , I can either post it out or email it to you
let me know and thank you for all your prayers and good wishes and also for checking in on us often
Maria xxxx

Thursday, July 3, 2008 6:51 PM CDT

I love this photo,Sammy-Joe is sick again this week , we have had a very hard three days with his behaviour being amplified , its quite difficult when he gets frustrated and hard to help him through the pain especially when we dont know where the pain is coming from , he is so delightful usually , but this week he has been a nightmare , but I know it has to do with some kind of physical pain he is going through , the hardest thing about this condition is not knowing where we are heading and what can happen to Sammy-Joe , neurologically we know it is a illness of degeneration ,so everytime something happens to him behaviour wise I start to panic because I CAN TELL something is happening to him that isnt right , these children have an extra white matter film around the outside of their brains and usually this matter thickens as they degenerate , I really do hope that Sammy-Joe can have an MRI soon because this is what is concerning me , before he suffered his setback with the swallowing and chewing his behaviour amplified also , and then WHAMMO he ended up in hospital for six weeks
Maria

Wednesday, June 25, 2008 8:22 PM CDT

I am going to let the photos speak for themselves , the children had so much fun

Thank you Delfin Lend Lease for giving the children a wonderful Day




















what an amazing rush it has been , we have had a wonderful three months of this beautiful project Delfin and Naturform , we had the children come out again on Friday so they could play and take some more photos for some more newspaper coverage , its been a wonderful time for all involved

The 17th of June 2008

More gorgeous photos

















We should be in the local paper today , The Hume Leader.
here are some more great photos of the day
Tom Trevaskis was introduced to the children of our support group , this wonderful man that was from a great team of people from Delfin that made our dream come true .

































Saturday the 14th of June



Sammy-Joe is interacting with other children so all the isolation that he felt before the Pavillion has now started to go away , he can be where all the kids are , he is less frustrated and seems to want to mingle with the crowd .






Open day for the Pavillion , what a great day , everyone had fun , Sammy-Joe was in his element , he loved the crowd which is unusual for him , he coped well with everything , he even had his face painted , how amazing !!!














he even cut the ribbon , we had a ball , it was so much fun , all the children came to visit and loved it , some of the children from the support group came it was fantastic !!
















Everyone that was here on Saturday the 14th deserves a good applause ,thanks for coming out on such a miserable day and making our day special , thanks to everyone that travelled from Geelong and also Aulbury , great effort .
Our story should be in the local paper today , I will let you know
and I will also add more photos this week , there are many to come , just need to upload them on the computer , I wasnt feeling well yesterday the 16th of June , not sure , think I have a slight ear infection which was making me dizzy and nauseas , Christian has stitches on his forehead because he was crawling under the trampoline to try and get all the balls from the ball pit and hit the pole , split his forehead open , we ended up in hospital on Saturday night , he wasnt too impressed , thats the only thing that went bad , like my cousin Luisa said
Murphy's law,
"whatever can go wrong, will go wrong" well, it looks as though aside from Christians incident, that everything went right on Saturday, so you can throw Murphy's law out the door I think!

Friday the 13th June 2008

Sammy-Joes play area link to MSN
http://video.msn.com/video.aspx?mkt=en-au&brand=ninemsn&playlist=videoByUuids:uuids:b3053877-e63c-498b-b792-479a0ac91399&showPlaylist=true&from=channelinline&fg=news
PLEASE HAVE A LOOK HOW HAPPY Sammy-Joe is thank you DELFIN AND NATURFORM

Maria


















Sunday Queens Birthday weekend





The beautiful team from Delfin




I pray all the time and I know that Miracles happen , look at whats happened with Sammy-Joes Journey and his life , Praise God and bless everyone that has Gods light within them , and for those that dont , may GOD Help them see what is right .





MY Lord
Thank you for every moment in our lives.
Thank you for all you have given us.
We are because of you
whatever we do ,think, have or feel,
is because of you
May we be vessels through which you speak.
In all of our daily actions may the intention of love
be what drives us forward .
May we always allow Gods will be the way to pave our path and our Journey .
love to you all and our sincere gratitude towards you all .
thank you
Maria








Wednesday June 4th Beautiful people , with Passion and drive

Delfins Backyard Blitzers , they came today by the dozen to do all the lanscaping , it was wonderful to have all these people in my backyard , connecting together and working together for Sammy-Joe


















































Tuesday 3rd of June 2008





Someone once told me "in the true spirit of giving one does not need recognition or do we give for recognition "" BUT I BELIEVE THESE GUYS AND ALL THE SUPPLIERS and SPONSORS DESERVE RECOGNITION FOR ALL THE GOOD WORK AND TIME THEY ARE GIVING TO THIS , PEOPLE HAVE COME IN dozens to help and they have put in all their time , generosity TRUE BLUE AUSSIE SPIRIT OF GIVING , we are good people DOWNUNDER and this has shown me that GOODWILL still EXISTS and is alive in Australia , OUR SMALL COMMUNITY HAS WIDENED AND WE HAVE STRENGTHENED out of this project ,, THANK YOU SO MUCH NATURFORM ,AND DELFIN AND ALL THE SUPPLIERS , SPONSORS AND GIVERS ,, THANK YOU FOR HELPING TO CREATE A BETTER LIFE NOT ONLY FOR SAMMY-JOE BUT FOR ALL OF US INVOLVED IN THE FRIENDS OF SAMMY-JOE COMMUNITY , THIS PAVILLION WILL NOT ONLY GIVE SAMMY-JOE A LIFE OUTSIDE HIS BEDROOM , BUT IT WILL ALSO GIVE US A LIFE AS A FAMILY AND HELP ME RUN MY SUPPORT NETWORK AND WIDEN THE OPPORTUNITES TO HELP US BUILD ON WHAT WE HAVE TODAY .

YOU HAVE HELPED US BUILD A STRONG SENSE OF CONNECTEDNESS WITH OUR COMMUNITY
THE DELFIN AND NATURFORM WAY .


Thank you to everyone that checks in on Sammy-Joe by viewing this journal and thank you for leaving a guestbook message , Sammy-Joe loves me reading them to him , please try and leave as many messages as you can , he loves the little graphic pictures also . its also good for us to know that we are reaching our goal of raising Awareness .
Now that we have a Pavillion please continue to send postcards and pictures because I do intend to pin them all around the place for him to see , I will take some photos of activities that we will have set out also and also all the good fun that we will have in there , I will make sure all the SPONSORS LOGOS GET POSTED as well , and also keep everyone up to date with the progress reports and newsletters , after open day we will put together another newsletter to acknowledge all the people involved with this GOOD WILL PROJECT , thank you
mwaaaaaaaaaaaaaaaaaaaaaaa AND HUGS from Sammy-Joe , he says ""I lub you "" which means I love you in Sammy-Joe language ,,lol,,







Sammy-Joe loves playing in the Pavillion










Landscaping started yesterday

Thank you Glenn Bailey and the team the boys from Baileyana irrigation and Landscaping









Thank you to Celsius Interior Designs for the making and installation of the storage units





Thank you to all the boys from Naturform and Site manager Jamie Zoch ,david and Clint from Northwest heating and Airconditioning for installing the split systems so that we can stay warm in winter and cool in summer ,, great team work boys , Sammy-Joe wants to play with all when this is all done , maybe you guys can play indoor soccer , like my hubby Joe suggested ,,lol,,
Jamie , Sammy-Joe thinks you are the ants pants , he really loves you , he listens to you and wants to be like you , he doesnt forget his ride on the scissor lift , he keeps saying JAMIE TAKE ME UP UP IN THE WORLD

















Sunday 1st of June 2008

Woke up this morning thinking I was dreaming , this is all so much like a dream , I pinch myself to understand that its all real and true , what a dream come true for Sammy-Joe and us as a family , after being trapped in this small house for five years trying to escape the harmful rays of light , Sammy-Joe will now have a better chance in life , my intentions with the Pavillion doesnt stop here , I will make sure this grows into other projects so that one day we can have a community based venue to run all the groups for children and young adults that are so affected by light , there are so many other children that have light senstive illnesses , this is a dream come true .
thank you so much Naturform and Delfin
Tony Jackson , Jamie Zoch and his team and Anne Jessop and Tom Trevaskis and their team , you are amazing people and Miracle makers
thank you
and of course the numerous suppliers that have brought this dream into a reality
WE ARE FOREVER GRATEFUL TO YOU ALL

Thank you to Jeff and Peter from Play Safe Pty Ltd
for installation of Rubber Floor , it was a pleasure meeting your team and speaking with you , I look forward to personally meeting up with you all again on OPEN DAY
thank you to Lions Club for Funding the floor and thank you George Adams for funding Shutters , thank you , it was a pleasure speaking to you all and I look forward to meeting with you all on the open days











The Pavillion is looking fantastic , have a look at these photos , Joe and I and the kids think this is a MIRACLE , things are gonna be so different when its finished , its an incredible difference and how wonderful and exciting for Sammy-Joe



Laying of the rubber floor

Thank you George Adams for a great concept , its wonderful



thanks boys for the incredible job what an amazing concept ,, its a great idea a way to recycle old tyres , who ever thought of this is a genius !!





look how incredible its looking


















We love this Wall its a masterpiece










Delfin and Naturform are a dedicated lot , they are doing a tremendous job , I feel like everyone is becoming a big part of our family ,, look at what they have been doing



























Who else is involved in the project?

More than $100,000 of pledges have been received to date from companies including:

• Naturform
• Andel Temporary Fencing
• Bondor

Glen Bailey and his team
Baileyana irrigation and Landscape Gardeners
• Boral Concrete
• Clayton Utz
• Coates Hire
• Celsisus Interior Design
• GJR Electrics
• Greg Schofield Engineers
• Highrise Painting and Decorating
• Hume City Council
• Lions Club
• Mirabella Lighting
• North West Air-Conditioning and Heating
• Omintech equipment
• Quiksilver
• RSEA Safety Equipment
• Security Plus Australia
• Smorgon ARC
• Strammit Steel
• Tall Trees
• Tommy Oz fencing
• Urban Edge Landscape
Kingma and Kingma Photogrsphy
Bunnings
Hot Beam Solar Lighting
Architects
• Westweld Steel Fabricators
• Winslow Constructors

and many many more ,, thank you so much for everything you are doing for us


Slowly I will collect all your logos and add you all to this page , thank you so much for being a big part of our lives




Wow ,look how the work is progressing , its looking great !!
Thank you to everyone involved

Thank you also to Paul from Highrise Painting and to DULAX , good job , well done , what a wonderful GOODWILL PROJECT














Look who is a happy Chappy










the boys that installed the shutters , thanks guys





Our wonderful painter , thank you

Sammy-Joe cant wait to get out there and play , he is very excited , he is starting to go a little stir crazy lately as he hasnt been outside for a while , often at night he will run up and down in the structure , the most exercise he has HAD in A LONG TIME , these are the things that we take for granted in our own lives , these are the things that Sammy-Joe is restricted in , at least once this is finished Sammy-Joe will finally have a life outside his bedroom
THANK YOU SO MUCH DELFIN , NATURFORM AND ALL THE SUPPLIERS AND SPONSORS , YOU ARE ALL EARTH ANGELS TO US
WE LUV YA !!!!

Thursday 22nd May 2008

Sammy-Joe and I are finally back home , we spent two days in hospital , he had surgery twice and is now recoverying happily at home , we both need a rest , we are happy to be home , day procedures never end up to be day procedures for Sammy-Joe we always end up staying longer than expected , he so good now when he is in hospital I am so proud of him .
Well Done Sammy-Joe , I will take photos of him tomorrow and post them on the website .
hugs to everyone and thank you for leaving me emails and messages , we do appreciate all that you do for us , thank you
Maria xxxxxxx

Wednesday 14th of May 2008

We are finally getting over our colds and flus , Sammy-Joe was so sick , he had it for four weeks , I have been struggling for the last three weeks , I now have a sinus infection , but this is nothing compared to how sick I have felt .
Everything with the structure is still on track and The Friends of Sammy-Joe Foundation are having another Fund Raiser , We are now selling Krispie Kremes by order , so please if you are interested please email me and I will send you out an order form
we also have 13 committee members now which I am very happy and grateful for , it is important to have like minded people and people that share the same vision in a charitable Trust . I am happy with the response .
We have been able to help the two families that needed help and this has made me extremely happy .
I have some more photos of the twins and only recently have been to their house to give them the good news about their application for funds .
Nadia and Lauren and the twins are extremely happy , I feel so blessed to be a big part of helping them .


Melissa and Marianne and Nadia (mum)




Me and the twins



Christian has been unwell also and has only just gone back to school , Joe too had some time off work to take care of us , so its all now getting better finally .

Cant wait for the Structure to be finished , it will certainly change our lives , Sammy-Joe was excited to sit in it in the afternoon , he even ventured outside to be with the builders ,


Sammy-Joe and the boys from Naturform and Delfin , thank you so much boys , Sammy-Joe was so happy to be a part of your team










UP AND UP on the Lift with Jamie






he was up there with his "jimmy jams "
he cant wait for his playground to be built .








thanks for your patience and thank you for your support and prayers , we truelly are grateful .
Maria xxx

Wednesday, April 30, 2008 4:24 PM CDT

Sammy-Joe has been feeling under the weather lately and so have I , not sure why because all seems positive around us , the builders are still working hard at doing things for the Pavillion , all is in order , The Friends of Sammy-Joe is going to meeting on Wednesday of Next week at my house , i will take some photos then so you can see the amazing people that work hard at making things happen for the kids .
Sammy-Joe has to have surgery on the 21 st of May for his Peg change and I am hoping he will be ok for Open day in June , I hope he recovers well , usually our history of staying in hospital is lengthy , so pray hard that we get back home the same day .
Well I am confident that things will be "up and up from UP "and "I LUB YOU "
Maria

27TH OF April 2008

I cant believe we are nearly at the end of April , how quickly does the time fly , wow , this year seems to be speeding fast .
I will be taking more photos of the structure and adding them in , they have layed the concrete on both ends , the roof is on and they have pulled down our shed , I suspect everyday will be different now I have enjoyed having the builders around and conversing with them , they have all been wonderful , this is like a fantasy world right now , where all our wishes are being granted , I think I am in some kind of fairy tale for Sammy=Joe , he is so excited about it , everyday he looks out the window and says ,"" My playgound , my playground !"" he says it woth such joy , its so wonderful to see him so happy about something being done outside , and I say to him ""soon honey it will be all finished and you can play ""
He has been so sick lately , he has had vomitting and diahorea an infection in his ear and throut and also in his gums.
This week I have to take him back to the dentist and see what the results of the xrays were .I am suspecting he will need surgery again in his mouth , also he needs to have surgery in his peg to remove and change the peg feeder .
Sammy-Joe seems to always be in the wars when the seasons change , reading our journal history has proven that .
I have my first official Newsletter and have been trying to email it out to people , I have over 100 people to distribute it to , if you would like one please let me know ASAP , AND I will post one out to you .
Its The Friends of Sammy=Joe Newsletter and its our official 1st , I am so proud of what I have been able to achieve in the last three years with the help of good , generous people , and I know Sammy-Joe s name will always be remembered and admired , he is such a beautiful soul , I love him very much .
My other gorgeous son Christian has been talking to me about his future , he is only 15 and is undecided what to do with his life , I remember being 15 and wondering and being confused which way I was headed , please pray for him as he goes through so many thoughts , one thing he did say is he wants to be like me , which almost made me cry because I never knew that at all , I never even imagined him thinking that , he is so quiet and calm , although at times he can be a ratbag like most teenagers , I just remind myself its a sign of goodhealth .
please continue to pray for my family , family is the most important thing in the world , to be without love and care is the hardest thing in life , please pray for those who havent got family and please pray for them and reach out to them and lend a hand whenever you can , embrace eachother with warmth , kindness and love .
GodBless you all and please know that I AM grateful for all that you do for us in prayer .

Maria xxxxxxx

My New Career ,,, lol, thanks Robyne this is Gold

JUST A MUM?

A woman, renewing her driver's license at the Motor Registration office,
was asked by the counter clerk to state her occupation.

She hesitated, uncertain how to classify herself.

'What I mean is,' explained the counter clerk,
'do you have a job or are you just a ..?'

'Of course I have a job,' snapped the woman.

'I'm a Mum.'

'We don't list 'Mum' as an occupation,
'housewife' covers it,'
Said the clerk emphatically.


I forgot all about her story until one day I found myself in the same situation, this time at our own Medicare office.

The Clerk was obviously a career woman, poised, efficient, and possessed of a high sounding title like,
'Official Interrogator' or 'Town Registrar.'

'What is your occupation?' she probed.

What made me say it? I do not know.
The words simply popped out.
'I'm a Research Associate in the field of
Child Development and Human Relations.'

The clerk paused, ball-point pen frozen in midair and
looked up as though she had not heard right.

I repeated the title slowly emphasizing the most significant words.
Then I stared with wonder as my pronouncement was written,
in bold, black ink on the official questionnaire.

'Might I ask,' said the clerk with new interest,
'just what you do in your field?'

Coolly, without any trace of fluster in my voice,
I heard myself reply,
'I have a continuing program of research,
(what mother doesn't)
In the laboratory and in the field,
(normally I would have said indoors and out).
I'm working for my Masters, (first the Lord and then the whole family)
and already have four credits (all daughters).
Of course, the job is one of the most demanding in the humanities,
(any mother care to disagree?)
and I often work 14 hours a day, (24 is more like it).
But the job is more challenging than most run-of-the-mill careers and the rewards are
more of a satisfaction rather than just money.'

There was an increasing note of respect in the clerk's voice as she
completed the form, stood up, and personally ushered me to the door.

As I drove into our driveway, buoyed up by my glamorous new career,
I was greeted by my lab assistants -- ages 13, 7, and 3.
Upstairs I could hear our new experimental model,
(a 6 month old baby) in the child development program,
testing out a new vocal pattern.
I felt I had scored a beat on bureaucracy!
And I had gone on the official records as someone more distinguished and indispensable to mankind than 'just another Mum.' Motherhood!

What a glorious career!
Especially when there's a title on the door.


Does this make grandmothers
'Senior Research associates in the field of
Child Development and Human Relations'
And great grandmothers
'Executive Senior Research Associates?'
I think so!!!
I also think it makes Aunts
'Associate Research Assistants.'







the structure so far , remember this will not only help Sammy-Joe , but will benefit the support group as well and The friends of Sammy-Joe Foundation children , all who are allergic to light , thank you to Delfin and Naturform for hearing our PLEA.
I PRAY THAT GOOD WILL CONTINUES ON GROWING IN OUR WORLD , AND THAT EVERYONE OUT THERE IS TOUCHED BY THIS KINDNESS AND GENEROSITY , WE ARE ALL LIVING TOGETHER UNDER ONE SUN IN OUR UNIVERSE AND SOMETIMES WE TAKE FOR GRANTED THE THINGS THAT WE CAN SO EASILY ENJOY , AND THAT OTHERS CANT , PLEASE REMEMBER TO ALWAYS BE KIND TO ONE ANOTHER AND TAKE THE TIME TO LISTEN , FEEL AND KNOW .


Thank you to everyone that has helped and offered to help my friend Carmela and her son Anthony , she is extremely grateful for all the help she has received , groceries , fruit ,she now has an oven and a new toilet seat and her walls will be patched up soon and also an airconditioner , and her bill from the Chemist has been paid .
I am so happy that our plea for help has created a wave of GOOD WILL , thank you so much for those that have helped , please remember Anthony is still in need of toys , preschool books , big blocks ,clothes and food , please help


Sunday the 20th April 2008 9.30 am





LIFE IS WHAT WE MAKE IT

Live
We dont need a special occasion to celebrate
Living is a special occasion .

Transformation
What the caterpillar calls the end the rest of the world Calls a Butterfly
WORDS OF WISDOM FROM MY BEAUTIFUL FRIEND SIMONE
Hi everyone , thank you for checking in on us so often and thank you for all your emails
Its been a great week and of course a wonderful month .

Just want to remind everyone that we had a great time and we were able to help Victoria and Khalil and of course our beautiful twins Melissa and Marianne









Friday the 18th of April 2008


Some Photos of Family day also on the Sunday the 13 th Of April I attended Family day as part of the committee of The Genetic Support Network of Victoria , I had a great day , it was fantastic I was the photographer for the day so here are some photos , I sure wish Sammy-Joe couldve attended but he hasnt been well and the UV wouldve been too high for him

Levi and my friend Penny , mother and son , how beautiful is this photo




























Some more photos of the event , I cant believe it was almost a week ago , its been and gone and I am still very positive that all good things will come about with this Foundation and many families will be helped .















































The raffle winners are

1st Prize Reverse Cycle Airconditioning
Thomas
2nd GIFT BASKET $190 value
Victoria Moussa
3rd Basket of Patons Chocolates worth 150 dollars Joe Patti
4th prize Hamiltons Gift basket worth 150 dollars
Jessica Barbagallo
5th Prize
Food Hamper from Craigieburn Delicatissan worth $200
Frank Ascenso
6th Prize Innovations Hair and Beauty Hair care hamper worth 70 dollars
Joe Patti
7th Prize Food hamper worth $70
Mars
8th Prize Reflexology Voucher
Sam Inturrrisi from Geelong
thank you to everyone that bought raffle tickets and thank you for all your support
the evening was a great success and we raised over 7,000 dollars to help all the families of The Friends of Sammy-Joe Foundation.
there are many families in need of help
I would like to ask you all now to extend your will of GOOD AND GENEROSITY in helping my Friend Carmela

Dont forget the next meeting for The Friends Of Sammy-Joe Foundation is the
first wednesday night in May at Heidi s House ,let me know if you are coming
Also do you have lots of friends that are willing to do a Good Will project
, I have a friend her name is Carmela and her son Anthony is severely
Autistic , the two are in need of help
Carmela cannot afford an electrician and also a plumber , her toilet seat is
broken and so is her oven and her fridge , her walls have massive holes in
them and are in need of repair I need to find someone who is willing to help
her out of good will , could you please spread the word and gather together
as many good friends that are willing to help her
My friend T is having the airconditioner installed in her home , the one he
won from The Friends of Sammy-Joe Foundation raffle ,,, how good is that ,
he is a beautiful Earth Angel ,, good on Saint T, but Carmela is too
embarrassed to tell him about the oven , he also is having shutters put in
to her home for her, as Anthony self inflicts hits to his body against the
windows and walls sometimes ,, this is the Autism behaviour coming out , as
he doesnt have much language , he uses his hands and gestures to communicate
,he is a gorgeous boy and is 19 years old, but functioning at around the age
of 4 , if you would all like to gather together some toys too as Carmela
has been experiencing hardship and also isnt able to buy toys for him and
cannot even afford a bed for him , he sleeps on a matress on the floor , I
wondered if you and Connie and everyone else could help me help her , The
Friends of Sammy-Joe Foundation is unable to help her as Anthony doesnt have
TTD , XPD or CS ,but this family is in deed in need of help .From time to
time I gather together bags of food and some clothes and items that she may
need and bring them to her , but I do believe we need to gather together
some more items and some necessary needs for everyday living .Sometimes she
doesnt even have bread in the house and isnt able to leave him to go and get
bread .
Also the pharmacy where she gets his meds from , she has an outstanding bill
of up to 300 dollars and hasnt been able to pay for it and wont be able to
pick up his medication if she doesnt pay the bill .this is one of many bills
that she needs to pay .
I know how she feels , I have walked in her shoes , I KNOW what it is like to have no money and to be worried about how and
where you are going to find money to pay for things that your child needs ,
so my heart goes out to her , I am trying to always find ways to help her
There may be one thing that some people dont know about me and it is that I
have helped many families this way , if I can offer any form of help I try
and help , but financially I too am a struggling family ,so I can only help
so much , please help in any way you can ,, thank you and think how
wonderful you feel when you have helped in such a small way , its gratifying
and satisfying to know that GOOD WILL still exists amongst US
please help if you can

Maria Liistro


Forgot to mention
If you know any plasterers that are willing to help Carmela also with
mending all the holes in her walls , that would be great , thank you so much
Remember I know what its like to have no money and no help , the difference
is I started asking out loud for help , its a little harder for Carmela ,
but she feels comfortable asking me , so please please if there is anything
you can do to help her , please let me know , I can bring you over to her
house and you can meet her and Anthony , she is a dedicated mother , and has
done a lot to keep her son with her .
Its unfortunate that she is on her own because her life is already difficult
, so please please help in anyway you can and maybe The Friends of Sammy-Joe
,,( meaning the people )can still help her . Lets join forces and create a
Wave of Good Will .
hugs
Maria


me and Anthony , he loves me too
Sammy-Joe and Anthony are so similiar in many ways , Autism is like a puzzle , it confuses them and gives them fear , they need people they can trust , Carmela is someone Anthony loves and trusts , his mother dedicated to him the way I am dedicated to my son , caring for a child with a disability is a full time job and it takes strength of character a compassionate heart and all the love in the universe to get you through it .please email me if you would love to extend this love and give something to this family .













Just something to think about from a Mother that loves enormously ,, ,,Me I
mean ,,lol


Very touching Mother facts !

When you came into the world, she held you in her arms.
You thanked her by wailing like a banshee.
When you were 1 year old, she fed you and bathed you.
You thanked her by crying all night long.
When you were 2 years old, she taught you to walk.
You thanked her by running away when she called.
When you were 3 years old, she made all your meals with love.
You thanked her by tossing your plate on the floor.
When you were 4 years old, she gave you some crayons.
You thanked her by coloring the dining room table.
When you were 5 years old, she dressed you for the holidays.
You thanked her by plopping into the nearest pile of mud.
When you were 6 years old, she walked you to school.
You thanked her by screaming, "I'M NOT GOING!"
When you were 7 years old, she bought you a baseball.
You thanked her by throwing it through the
next-door-neighbor's window.
When you were 8 years old, she handed you an ice cream.
You thanked her by dripping it all over your lap.
When you were 9 years old, she paid for piano lessons.
You thanked her by never even bothering to practice.
When you were 10 years old, she drove you all day, from
soccer to gymnastics to one birthday party after another.
You thanked her by jumping out of the car and never looking back.
When you were 11 years old, she took you and your friends to the
movies.
You thanked her by asking to sit in a different row.
When you were 12 years old, she warned you not to watch certain TV
shows.
You thanked her by waiting until she left the house.

Those teenage years
When you were 13, she suggested a haircut that was becoming.
You thanked her by telling her she had no taste.
When you were 14, she paid for a month away at summer camp.
You thanked her by forgetting to write a single letter.
When you were 15, she came home from work, looking for a hug.
You thanked her by having your bedroom door locked.
When you were 16, she taught you how to driver her car.
You thanked her by taking it every chance you could.
When you were 17, she was expecting an important call.
You thanked her by being on the phone all night.
When you were 18, she cried at your high school graduation.
You thanked her by staying out partying until dawn.

Growing old and gray
When you were 19, she paid for your college tuition,
drove you to campus, carried your bags.
You thanked her by saying good-bye outside the dorm so you wouldn't
be embarrassed in front of your friends.
When you were 20, she asked whether you were seeing anyone.
You thanked her by saying, "It's none of your business."
When you were 21, she suggested certain careers for your future.
You thanked her by saying, "I don't want to be like you."
When you were 22, she hugged you at your college graduation.
You thanked her by asking whether she could pay for a trip to Europe.
When you were 23, she gave you furniture for your first apartment.
You thanked her by telling your friends it was ugly.
When you were 24, she met your fiance and asked about your plans for
the
future.
You thanked her by glaring and growling, "Muuhh-ther, please!"
When you were 25, she helped to pay for your wedding, and she cried and
told
you how deeply she loved you.
You thanked her by moving halfway across the country.
When you were 30, she called with some advice on the baby.
You thanked her by telling her, "Things are different now."
When you were 40, she called to remind you of an relative's birthday.
You thanked her by saying you were "really busy right now."
When you were 50, she fell ill and needed you to take care of her.
You thanked her by reading about the burden parents become to their
children.


And then, one day, she quietly died. And everything you never did came
crashing down like thunder.

"Rock me baby, rock me all night long."
"The hand who rocks the cradle...may rock the world".
Let us take a moment of the time just to pay tribute/show appreciation
to
the person called MOM though some may not say it openly to their
mother.
There's no substitute for her. Cherished every single moment.
Though at times she may not be the best of friends, may not agree to
our
thoughts, she is still your mother!!!
She will be there for you...to listen to your woes, your braggings,
your
frustations, etc.
Ask yourself.....have you put aside enough time for her, to listen to
her
"blues" of working in the kitchen, her tiredness???
Be tactful, loving and still show her due respect though you may have a
different view from hers.
Once gone, only fond memories of the past and also regrets will be
left.

**DON'T TAKE FOR GRANTED THE THINGS CLOSEST TO YOUR HEART. CLING TO
THEM AS
U WOULD YOUR LIFE, FOR WITHOUT THEM, LIFE IS MEANINGLESS*



How Exciting the roof is on the Pavillion How Exciting !!!!

Tuesday, April 15, 2008 3:37 PM CDT


Here are some photos to share , these are of the evening The Friends of Sammy-Joe Launch

What a sesational night , we raised alot of money to help the families that so desperately need the help , I am so grateful to everyone that came and to all that supported us through this wonderful time of giving , all our sponsors and all those who donated and also to those who gave their time .
The fund raising committee and all the committee members who did so much to help make this event a reality , my friend John who worked on the slide endlessly , amazing amazing stuff .
I believe for our first event it was a huge success , and I am looking forward to many more events ,, it was fantastic !!




Tony Jackson from Naturform said some nice words about us.



Louisa also said a few nice words ,amazing people.




My Friend Louisa , Me and Anne Edwards and Anne Sash in the background








Me my cousin Salv and Rachelle Rose , the two gorgeous people that organised the signed and autographed Melbourne Victory top that was Auctioned on the night


my hubby Joe filming ,,he had fun too


beautiful Liz and me and Christie




There are more photos to come , so please check the Journal often as I will posting lots and lots more photos

Monday the 14th of April 2008

We have had a wonderful and fulfilling weekend , firslty with our Launch of the Friends of Sammy-Joe Foundation and secondly with The Genetic support Network of Victoria family day , my beautiful friend Louisa has been with me the whole weekend and I think she is an incredible person and a wonderful teacher and mentor .
My other gorgeous and dedicated friends all came to The Friends of Sammy-Joe Foundation Launch
and its been a huge success !!I will post photos of the evening and explain in detail how the night panned out , it was wonderful .I am very proud to say that I am a part of a wonderful dedicated and hard working team of people , its incredible , the love the generosity that I was surrounded by on the evening , the support and understanding and the willingness to learn , love and understand the illness and the children and families affected by it , thank you to everyone that attended , it was a sensational evening full of giving .
Maria

April 12th 2008

Today is the event , the launching of our foundation The Friends of Sammy-Joe Foundation
it will be at 8pm at the Turf Club in North Melbourne
please make sure you come along
we will have door prizes and a raffle and even a Melbourne Victory Top will be Auctioned , its fully autographed and framed by the Team .
Hope to see you all there
Maria
April 9th 2007
Mission Statement for the Trichothiodystrophy (TTD) DNA Repair disorders Cockayne syndrome and Xeroderma Pigmentosum Fund.

VISION HELPING TO CREATE A BETTER LIFE
All persons affected by these conditions to have early diagnoses, early treatment of symptoms, early developmental and behaviour screening, and continuity of care in their family home, schools ,and educational environments , to support and assist them in community based environments helping them to develop independent skills and helping them in growing to live independently; thus fulfilling their potential .
Helping them to fulfil their right to life like any other person .
Helping them to live a better quality of life regardless of their disability or light sensitivity



1. Promote and commence Project, to help raise awareness into the illnesses Trichothiodystrophy, and other DNA-repair disorders, including xeroderma pigmentosum (XP) and Cockayne’s syndrome (CS), to provide a better community understanding of the symptoms of the illnesses and its outcome.
o Raise funds through public appeals and apply for grants to begin project in Victoria and in Australia.
o Raise funds to initiate clinical DNA diagnostic services for Trichothiodystrophy, XP, and CS that would be available to all hospitals throughout Australia.
o Support research in newborn screening. Thus allowing families that have already unconfirmed diagnoses of these illnesses in other siblings to be able to have DNA cellular diagnoses done here in Australia, rather than in another country.
o Provide travel assistance to doctors and scientists who have researched these illnesses to enable improved information dissemination at conferences held in Australia and worldwide.
o Continue to raise public awareness by making pertinent information available to the public so early diagnoses of these illnesses will be more likely. This will be accomplished by means of newsletters, flyers, press releases, and such devices as shaker tins for fund raising.
2. Promote early diagnoses and assist families in coming to terms with diagnoses of DNA repair disorders; also help to provide counselling and information to people with a family history of these DNA repair genetic disorders.
o Work in partnership with the families and communities to promote better understanding of the effects of the Trichothiodystrophy, CS and XP.
o Provide support by continuing to run the support group for the families and patients.
o Educate the caregivers and others actively involved with the persons affected by these conditions.
o Counsel patients and their families to inform about services and ways of dealing positively with professionals and the public .
o
3. Provide financial assistance to children and young people and/or adults affected by these illnesses.
o Provide financial and other material assistance, providing relief from financial hardship, for the families of children and adult patients in Australia affected by Trichothiodystrophy, CS, and XP (or other DNA Repair disorders).
o Enhance and maintain the quality of life of children and/or adults who have high needs due to Trichothiodystrophy, CS, XP and/or other DNA Repair Disorders; in particular for those participating in research.
o Raise funds for travel costs, interstate as well as overseas, for families and patients who must meet with scientists and doctors who are researching these illnesses here in Australia.
o Provide funds to allow families with children or adults with Trichothiodystrophy, CS, and XP to travel to hospitals that have doctors trained in and experienced with these illnesses.
o Help finance the complex needs of people with Trichothiodystrophy, XP and CS dependent on medical technology to live with their families.
o Seek respite funding to provide carers for an extra eight hours a week for caregivers affected by Trichothiodystrophy, CS, XP or other DNA-repair disorders.
o Assure a sun-safe in homes, schools, or work places by providing financial assistance for the purchase of UV protective clothing (hats, gloves, sunglasses, and shade cloths), UV monitors to measure levels of UV, tinting of windows, sunscreens, and medications that are not funded by PBS.


Maria Liistro and The Friends of Sammy-Joe Group

Friday 4th Of April 2008

While all the work goes on around him , Sammy-Joe snoozes away , with his hard hat on and workman bloodstones on his feet , he wants to be all part of the boys doing the job .





Amazing how much has gone from our backyard





The Work Continues

Naturform has put the story in their newsletter this week




the turtle doesnt seem to mind





removing all the dirt






making sure the holes were deep enough




pouring the concrete for the posts




Sammy-Joe woke up this morning saying he was very excited about the playground , he said he cant wait and wanted to help build it like bob the builder and Jamie , he is very excited about being able to play outside in the structure .

he loves to wear his christmas hat because he wants it to be christmas everyday .


Felicia the music therapists came over to play songs for Sammy-Joe he was very very excited

Monday the 31 st of March 2008

The weekend went well , no major hiccups, Heidi and I went to pick up the Entertainment books we are selling for The Friends of Sammy-Joe Foundation , if any one would like to purchase one please email me , I will be sending out emails to you all .We also went and had a look at the Turf Club , Its going to be a good night , we spoke to La Porchetta North Melbourne they will be providing the Pizza for us at a good price , so make sure you all come along , its going to be a good night held for a great cause April the 12th at the Turf Club .you can also purchase entry tickets at the door.
We have lots of Raffle prizes and door pizes to be won .
and also A Melbourne Victory Top all signed by the players to be Auctioned off .

the work so far is on track with the structure , we are still looking for more suppliers and sponsors to come on board , please email me or Tony Jackson if you would like to be a part of this exciting new project .
Please also look at Journal history to see the photos up to date .
Every day I WILL try and add as many photos as I can and also what ever articles we are featured in , we were in the Herald Sun on Friday page 15 I will add that also to the journal , but it is also featured here
http://www.vp-it.com.au/sammyjoe/media/media.htm

We have been interviewed for an international Magazine and I will post that in also when it goes to publication .
here are the latest photos

Tony Jackson from Naturform and Emily Wood and Tuulia Lampi Marketing Managers from Delfin LendLease Company
and Tony Trevaskis , the wonderful Man that co ordinated and drove all this along side Ann Jessop and Tony Jackson .
thank you so much beautiful generous people .





Tony Jackson gave Sammy-Joe and Christian some clothes donated by QuickSilver
the boys were both very grateful
thanks Tony for all your hard work .

March 27th 2008

These wonderful people from Naturform are pleasant caring and you can see they are passionate about what they are doing , we especially want to thank Jamie and Tony and their team of wonderful workers , I am amazed at how much hard work and effort they are putting into making this dream come true for us , they are soo nice , make me and Sammy-Joe smile and laugh because of their friendliness and sense of humour ,even when they are knee deep in mud and fixing sewerage pipes for us , they still manage to laugh and smile ,thank you so much Jamie for all the care and effort you put into making Sammy-Joe smile , I can see he idolises you , he wears the hard hat with pride and calls it ""JAMIES HAT .""













We are in need of more suppliers and sponsors


The boys at work 26th of March 2008


Jamie and Tony Jackson from Naturform

Tony ,Kane and Jamie hard at work

and our very own Sammy-Joe all decked out like Naturform boys







Thank you to Anne Jessop and Tom Trevaskis from Delfin AND Their Delfin team and Tony Jackson and his team from Naturform
THANK YOU SO MUCH
Saturday 21 st of March 2008


These people are not just building us a structure they are building us Hope , they arent just saving Sammy-Joe , they are saving us as a family .
Thank you so much we are so Grateful .




Thursday, March 20, 2008




The Best Easter Present arrived early for Sammy-Joe , news on our plans of building him an indoor structure ,

Delfin and Naturform and other suppliers will make Sammy-Joes dream come true
the dream of being able to play safe in a large area , away from the harmful rays of the Sun ,, true ,, we are all excited and extremely grateful , work commenced March the 11th , and THE STAR newspaper ran an article on the STORY ,

THIS IS A DREAM COME TRUE FOR ALL OF US , AND THIS WILL NOT ONLY HELP KEEP SAMMY-JOE SAFE AND PROTECTED FROM LIGHT BUT WILL ALSO CHANGE US AS A FAMILY !!!
WE ARE SOOOOOOO GRATEFUL TO THE BEAUTIFUL PEOPLE FROM DELFIN AND NATURFORM ,
Thank you to ANNE JESSOP from Delfin , who two years ago heard our cries for help ,, thank you
and thank you to Tony Jackson from Naturform who came along and helped make this DREAM come true , and of course to everyone behind the scenes that have also worked hard from DELFIN AND NATURFORM
TO think that GENEROUS KIND EARTH ANGELS EXIST HELP US TO BELIEVE THAT THE WORLD IS FULL OF BEAUTIFUL PEOPLE ,, THANK YOU THANK YOU

Sammy-Joe is excited and is wanting to hurry it all up , everyday he looks out the window and says ,,""MY PLAYHOUSE BUILT YET?''He ventures outside in the evening and runs , he has never run so much in his life , imagine how it will be when its up , he can run all day long if he wants , I Havent stopped crying tears of joy , I am sooooo happy
dreams really do come true .


He knows the builders by name and also calls them through the window .

Calling out ""JAMIE ,, JAMIE , BRAD , TONY , GARETH ,, BUILD ME A PLAYHOUSE ""

THE STRUCTURE WILL ALSO HELP ME RUN THE SUPPORT GROUP EASILY AND OFFER A PLAY AREA ONCE A FORTNIGHT FOR THE OTHER KIDS WITH DISABILITIES IN OUR GROUP to play safe ,
THE FRIENDS OF SAMMY-JOE FOUNDATION has really kicked off and OUR LAUNCHING IS ON APRIL THE 12TH AT THE TURF CLUB IN FLEMINGTON , PLEASE MAKE SURE YOU ALL COME ALONG AND HELP RAISE MUCH NEEDED FUNDS FOR THE FAMILIES THAT HAVE CHILDREN WITH TTD , XPD AND COCKAYNE SYNDROME . TICKETS ARE SELLING FAST AT 30 DOLLARS A HEAD ALL PROCEEDS WILL GO TO HELPING THE CHILDREN OF THE FUND .

I am very very excited about it all .
here are some photos and also I will post the article here so you can all see as well


JAMIE ,BRAD AND Gareth Sammy-Joes newest friends ,
they are part of the generous team from Naturform






Jamie gave Sammy-Joe a hard hat and he wears it to bed too , he loves it !!!!


Tony gave him a naturform tshirt and guess what ,, he wears that to bed too , I am having a hard time taking these things off him ,,,lol,, he loves it !!!

This is A letter sent out from Tony

We are currently undertaking a charity project with delfin lend lease resident Sammy Joe Liistro who has the degenerative disease TTD
We are building a outdoor play centre for him which will also be used for other children with TTD and similar disabilities
We are asking prefered suppliers if they would be interested in donating time or equipment etc to help with this project
I have attached some info on Sammy Joe for your perusal as well as proposed plans
Construction has commenced Wednesday 11th March

we are attempting to organise newspaper , radio and television media coverage at the moment to help with further community involvement and awareness



Please contact me asap if you are interested in assisting

Regards

Tony Jackson | Naturform


Now you see it .


now you dont ...


Clearing the property .

Next week I will take more photos and post them , this way we can all see the process.
HAPPY EASTER EVERYONE !!!!
Here are some photos of Christian , he was fortunate enough to get some tickets to the Grand Prix by Very Special Kids , thanks Janet , who thought of him , Christian is sometimes left in the shadows of all of this and I was so happy that he has been acknowledged lately for all the good things he does , he is a patient , caring and loving young brother , that loves Sammy-Joe very much , I couldnt ask for a nicer young man , he is beautiful , not because he is my son , but because of his loving and caring nature

Joe and Christian had a great time

Christian got to meet some of the Ferrari Team members , he was very pleased



Aileen and Sammy-Joe love to have fun together




Uncle Tony and Jordan came to watch Christian train one sunday at the Whittlesea Pacers

Jordan gets a cuddle from me


I will post some more photos this week
hope you enjoy these

More GOOD news

In the next week , we will be in The Hume Leader newspaper with more interesting news , Sammy-Joe is such a good boy and he was so well behaved with the photographer , hopefully this media attention will help us bring more people to our very special Charity Night and Launch , please let me know if you will be attending , you can buy tickets at the door , if you decided to come on the night , we hope to have over 150 people there on the night and we do hope it will be a success for The Friends of Sammy-Joe Foundation , this way we can help all of the other children with this illness in Australia .
if anyone would like to make a direct deposit to the fund
here are the details

The TTD, CS , XPD TRUST FUND , FRIENDS OF SAMMY-JOE FOUNDATION
DIRECT DEPOSIT A DONATION TO
COMMONWEALTH BANK IN CRAIGIEBURN
063 875 1029 7747

ABN number is 33143598689
we are a charitable trust and we do issues receipts
please let me know if you have deposited some funds and send me your address this way we can send you a thank you note and also a receipt
Please do make sure you let me know if you do deposit this way we can acknowledge your donation
thank so much .
Hugs
Maria Liistro
The money deposited will go to helping Children and young Adults still surviving with this condition and in helping to Create a Better Life for them .
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx




Sammy-joe isnt well right now , but he still wears his glorious smile , his spirit is strong and he tries to fight this illness everyday , sometimes it looks like it will beat him , but then he fights back and stays strong for a bit , he has a bad chest infection and is on his fourth course of antibiotics
please continue to pray for him







Sammy-Joe has many friends and lots of people praying for him , we are extremely grateful to each and everyone of you , that does this for our boy , Sammy-Joe wishes it was Christmas every day of the year and continues to wear his Christmas hat , he really loves christmas and is trying to let us know that he would love it everyday ,, he continues to ask for the tree and also asks for presents and his hat ,, he is really cute

I am always trying to encourage him to weat different hats but he keeps going back to the christmas hat , one day he even decided he would be captain underpants , from the famous story

he loves to wrestle his dad


WE JUST wanted to say thank you to all our friends for the constant support and love you send our way , we are most grateful for it
Maria





http://www.ferraro.auz.com/
meet all our beautiful friends at Ferraro Reception centre

Managers:
Angela Ferraro
Sam Ferraro
Gus Ferraro



14 Onslow Avenue
Campbellfield, Victoria
Australia, 3061

Phone: (03) 9357 2200
Fax: (03) 9357 2622
Email: ferraroreception@bigpond.com



















The friendly and beautiful staff .


Thursday, February 21, 2008 0:01 AM CST

Our Next Fundraising Event for the friends of Sammy-Joe foundations will be April 12 th

The Friends of Sammy-Joe Foundation is having a Fundraising Fun night on the 12th of April at the Turf Club Bar and Cafe 1 flemington rd North Melbourne On Saturday 12TH OF APRIL 2008


TIME 8 TO Late ,
30 dollars a head


finger food included and drinks are at bar prices come along and help raise much needed funds for children that have Trichothiodystrophy , Cockayne Syndrome and Xeroderma Pigmentosum , very rare genetic disorders that have affected many children in Australia to date.

This will also mark the official Launching of the foundation , come along and have some fun,and help us make are difference to these very special lives
ps if anyone can help with donations of prizes to be raffled or help sell tickets , please let me know ASAP
Maria
via email sammyjo2@bigpond.com.au
and we can arrange for you to come pick up the tickets

we are desperately trying to help a set of twins that have the same condition as Sammy-Joe , they too are allergic to light , please help if you can


remember also The Friends of Sammy-Joe is a charitable Trust and we do have DGR status


THANK YOU SO MUCH FOR YOUR GENEROSITY AND SUPPORT
IT IS ALL GREATLY APPRECIATED
if you would like to make a donation or direct deposit to the fund please email me and i will send you all the details , thank you to those who have already donated , we will issue you a receipt ASAP as we do have DGR status


I will post a photo of the Twins , its wonderful to know that i have actually found other kids in my area.
I will add some photos to this website to introduce you to the Twins


meet the beautiful Twins Melissa and Marianne


please help to raise some much needed funds for these girls .
Maria

if anyone would like to make a direct deposit donation , please let me know and i can send u the details
email me at sammyjo2@bigpond.com.au

Wednesday, February 13, 2008 8:59 PM CST

Life has been pretty hectic the last few days , Sammy-Joe really hasnt been the best with his health or behaviour ,i think he is quite frustrated and annoyed at alot of things.
the weather hasnt been too bad for him , but he hasnt ventured at all outside ,he prefers to hide away here wher it is safe away from the harmful uv rays
M

Saturday, February 9, 2008 4:46 AM CST

Sammy-Joe has been unwell for the last week , but has overcomed alot of it by sheer determination, putting it mildly ,he is as rough and tough as steel and will try his hardest to overcome things , even thou it may take him a little longer , he is determined not to let himself be beaten .
I think we all need to learn from his attitude
M.

Sunday, February 3, 2008

Sammy-Joe hasnt had a great day todsy, he has been unwell all day , he has had a cold all week as well as a uti.
I have been trying to keep a close eye on him , and i havent had much of chance to sort out the house, there is a mess everywhere , i guess its gonna wait anyway I have some time.
Sammy-Joe has had a rough trott this summer , he has had it tough this is why he hasnt had a break from being unwell.summer is usually like this for him.
He struggles with this every year ,
I hope things will improve before he turns 19.
thanks to those of u that have sent cards and packages already for him for his birthday , he has been extremely happy upon receiving them
thanks so much
with gratitude and love
Maree

Wednesday, January 30, 2008 0:38 AM CST

Hello , I am finally getting the chance to write an update , Sammy-Joe hasnt been well the last few weeks , he has had another UTI and also a chest and ear infection .
Sammy-Joe has had to also adjust to some new carers and its been great , he missed Reena alot ,but now has a wonderful new carer as well.
I have noticed that he has lost some weight as well, his sleeping has also been allover the place , but I GUESS ITS SUMMER , THE WORST TIME FOR HIM.
I will try and update as soon as possible with photos , its been while , since everything has been hacked into , I have lost some photos , but will regain new ones in the coming weeks.
Maria

Monday, January 21, 2008 9:40 PM CST

someone has hacked into my system and wiped out alot of my files and emails so I do appologise if I havent emailed for a while
Marie

Monday, January 21, 2008 9:40 PM CST

someone has hacked into my system and wiped out alot of my files and emails so I do appologise if I havent emailed for a while
Marie

Friday, January 11, 2008 5:48 AM CST

If we do not radiate the Light of Christ around us, the sense of the darkness that prevails in the world will increase.
Mother Teresa


The real troublemakers are anger, jealousy, impatience, and hatred. With them, problems cannot be solved. Though we may have temporary success, ultimately our hatred or anger will create futher difficulties. Anger makes for swift solutions. Yet, when we face problems with compassion, sincerity, and good motivation, our solutions may take longer, but ultimately they are better.
The Dalai Lama





My out look on life has of course changed over the years. There are diffent credes and Reedes that I try and live by Desiderata is one of them.
-- written by Max Ehrmann in the 1920s --
Go placidly amid the noise and the haste, and remember what peace there may be in silence.
As far as possible, without surrender, be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others, even to the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons; they are vexatious to the spirit.
If you compare yourself with others, you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.
Be yourself.
Especially do not feign affection.
Neither be cynical about love, for in the face of all aridity and disenchantment, it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.
With all its sham, drudgery, and broken dreams, it is still a beautiful world.
Be cheerful. Strive to be happy.
















God comes into our lives when we do things that make us truly human. When we help the poor, when we speak out for justice, when we get over our exaggerated sense of our own importance, when we learn to respond with child-like awe to the sun shining in the summer or to the snow falling in winter, when we get over being stuck on ourselves, we make room in our lives for God.
Rabbi H.Kushner

I have always focused on positive over negative and things just seem much clearer
my own quote.
love and hugs to you all and thank you for taking the time to read our journal
Maria

Thursday, January 10, 2008

It was sooo hot today , poor Sammy-Joe he was so frustrated and a bit stir crazy , he wanted to do so many things , but the heat was just too frustrating to all of us , I think our airconditioner was struggling today also .
I am happy that you all enjoyed the photos I have been posting , Sammy-Joe has enjoyed looking at them also , he seems to like looking at himself on the computer , and he likes to remember alot of the events that have taken place.
Sammy-Joe seems to be sad also that Christmas has ended , he liked having the tree up and looking at all the toys that he could play with .
When I put away the tree he really thought I WAS going to take away alot of the toys he has received ,but I soon convinced him that he could keep them ,and he neednt worry about it .
I have some more photos to share with you all





beautiful Maria gets a big hug from Sammy-Joe , Maria is a good friend of ours




MY Lord
Thank you for every moment in our lives.
Thank you for all you have given us.
We are because of you
whatever we do ,think, have or feel,
is because of you
May we be vessels through which you speak.
In all of our daily actions may the intention of love
be what drives us forward .
May we always allow Gods will be the way to pave our path and our Journey .
love to you all and our sincere gratitude towards you all .
thank you
Maria

Wednesday 9 th of Jan 2008

Good morning to everyone , Sammy Joe is sitting here playing with his puzzles while I write emails through the support group , he hasnt been too well again .
He has picked up some kind of infection lately and his stomach isnt right , other than that he seems calm and content .
here are some more photos to share with you all as promised .

Hug for Rosa


my cousin George lets Sammy-Joe sit on the Harley he built from scratch.

Sammy-Joe is so happy about it ,, boys and their toys



george gets a hug


Sammy-Joe smiles , he is happy that Georgecame to visit

Saturday, January 5, 2008 1:38 AM CST

Simone and Sammy-Joe share a Christmas hug



here are some photos to enjoy , these are some from Christmas , Christians birthday and someof mine birthday ,


my friend Lin and Rosa





my cousin Antoinette and her family







playing in the dark outside











our dog Rockzy

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