Welcome to Sammy-Joe Liistro's Webpage The Best Day of My Life is when I met my Heros The Bombers , Matty (pictured here with me ) is one of my greatest Heros and has played a big part in helping me .
It has been provided to keep people updated about our Child and his condition called Trichothiodystrophy . This means he cannot be exposed to light this also means Sammy-Joe is constantly running from the sun and UV, this condition is so rare and so painful that sometimes the symptoms are extremely difficult to be recognised easily . It took 13 years for Sammy-Joe to be diagnosed , but now that he has a diagnoses, at least all the puzzles of why he was so sick have fallen into place . Trichothiodystrophy is a DNA repair disorder ,which means Sammy-Joes cells are constanly breaking down due to UV exposure ,they cannot be repaired and so they die off and mutate causing all sorts of problems to his health causing him tremendous pain . Bright lights, sunlight, glare, and fluorescent lights bombard his central nervous system and result in fatigue, anxiety, dizziness, headaches, and other physical problems.Glare in the environment or sunlight makes it hard for him to sustain visual focus. Fluorescent light and the sun in particular, are most problematic to him and his everyday living Despite all of his struggles Sammy-Joe continues to amaze us all with his sheer determination and Will to keep Living .Sammy-Joes struggle will be an on going one because ,, HOW do You Run from the SUN ? ? We can only promise to keep trying to enhance his survival and give continious love and care and to provide for him the best quality of life that we can .
This is why we have set up a Trust Fund to raise money so that we can continue to help Sammy-Joe live a good quality of life, if you would like to donate please contact me and I will let you know which bank and what you need to do , the money will help provide solar protective clothing and everything he needs to continue to survive We also have a dream to have an indoor area for play where Sammy-Joe can play without being affected by the rays of light , maybe a playground set up in an indoor enclosure of our garden this way Sammy-Joe can get to enjoy seeing trees and wildlife without getting exposed to light
Despite all the hardships that he faces, Sammy-Joe is a loving boy that has a passion for life and living things Sammy-Joe faces many hardships to do with over exposure to light . Sometimes the smallest of light exposure affects him for weeks , at times he is isolated from society and spends most of his days playing in his room or just sleeping off the days to avoid sunlight The Trust Fund has also been set up to help take Sammy-Joe back to The USA where doctors and scientists are working on his DNA to try and one day come up with a cure , they have also helped Sammy-Joe improve since the last visit , Sammy-Joe has more than doubled his weight and has grown 53 cms without the use of growth hormone within the two year s of returning from America He has grown so much , he is astounding all the doctors and scientists with his results , amazing effort from Sammy-Joe A tremendous achievement!! Imagine how much more he can improve if we take him back ? , his speech has improved , his concentration and his cognitive skills and everyday living skills have all improved . please help us to keep Sammy-Joe GOING STRONG !!
If you would like to make a donation
please EMAIL me sammyjo2@bigpond.com.au
PLEASE SIGN OUR GUEST BOOK
and please feel free to contact me at any time
The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care, please leave a message in the guest book to show Sammy-Joe you care for him and his situation
The Beautiful People from Quilts of Love have stitched together with Love , Sammy-Joes quilt , have a look we all cried when we saw it and I am very grateful to them all
Sammy-Joe loves his book that Patch Adams gave him
Sammy-Joe s Love Quilt made for him and stitched with Love , Thank you to everyone that put this lovely gift together for Sammy-Joe , he loves it and sleeps with it every day and night , he travels with it in the car to the hospital and back .
My Happiest day when I met my Hero James Hird
Latest on Sammy-Joe Sammy-Joe has had surgery for a food peg as he has lost his ability to chew and swallow after being so sick for over eight months .We understand and know that his condition is progressive and at the moment we are dealing with our grief.
Sammy-Joes trip to America has been postponed due to his recent condition and recent stay at the hospital. Sammy-Joe is now 18 and we have raised money to go back to the USA.
He was going well up until now, but has now hit a stage of regression. He is losing his ability to speak which has been extremely hard for him adjusting to his new way of life with his food peg, which we have named "POLLY ". All the new medications he is on and just the new way of living is a also a big adjustment. He is also using his wheelchair more often, and I suspect that there will be more changes to Sammy-Joes life as he gets older, reminding everyone that this is a neurodegenerative disease and as time gets on Sammy-Joe may or may not lose some other abilities.
Because his condition is so rare it is still unknown as to what to expect, but what we do know is that it is a life threatening illness and DNA cannot repair itself. Cells die off and mutate due to the UV exposure, no matter how minimal it is.
So what ever happens it is irreversible and it is highly likely that it will progress, and will be a progressive deterioration.
This has been quite difficult for us to accept and is very painful to watch our beautiful boy slowly deteriorate. I know , I feel very sad at times , but I must focus on all the positives , Sammy-Joe has brought me so much Joy in so many ways , he makes me smile , laugh and cry like no one else I know , and I know that Joe and Christian feel the same way about him , so I thank God every single day that I am with him and Sammy-Joe wants to be with us , he continues to live to be with us , I know although it is hard at times , (especially when he is having bad days , which sometimes its more than the good days )I know I only will have him for a short time so we must make the most of what we have together .he absolutely loves me and idolises me , he loves his dad and he loves his brother so I cannot let him down , I have to do everything in my existance to make things work for him .make his life comfortable , joyous and memorable Thank you so much for all of your prayers , thoughts and well wishes they mean the world to us , especially to our Sammy-Joe
Maria Liistro Dont forget Sammy-Joe is a Hero and he is amongst other Heros ,he is a shining light in our life and he doesnt even know it ,he goes about his life with the knowledge that everyday could be his last , he tells me every night , he wants to live and he loves us all and he wants to stay Here at Home with us , please pray for him .
Dylan is one of Heros , please Pray for him .
A big thank you to everyone at Hugs and Hope for all the cards you have sent us
A Big thank you to Clayton Utz solicitors for working endlessly on trying to set up the trust Fund for "'
The Friends of Sammy-Joe Foundation"" for children suffering TTD, XP AND CS
www.tigers.com.au.
Living without Light.
Raise money for the Foundation by Joining Simple Savings , when you join a portion will be forwarded to the Foundation
The Latest On Sammy-Joe , we have had to cancel our overseas plans this year due to ongoing health issues , our aim is to make it over there before the end of 2010 , lets keep our fingers crossed that we will make it , Sammy-Joe has lost an enormous amount of weight and has also regressed in many areas , it is unavoidable at times to protect him from light , such as hospital appointments and car trips , these things happen in life ,other than that he is well protected in his enviroment at home , we are weighing up whether to try and keep him here and probably ask the meds to come to us from the USA , The Friends of Sammy-Joe Foundation has many future plans for all the children , we need your constant support , understanding and ongoing of raising awareness to allow our cause to move forward. Thank you to all of you who have supported us through many ordeals this last year ,for this I am extremely grateful to you all.
Journal
Wednesday the 20TH FRIENDSOF SAMMYJOE GROUP DAY
We had our Friends of SammyJoe group day on the 20th of April everyone had a ball !!
Sunny and Charlotte came all the way from NSW ORANGE
Your gift will help millions of people stay connected with friends and loved ones during challenging times.
This page has been viewed 90119 times.
Note: The foregoing information was
authored by the patient, parent or guardian, or other parties who
are solely responsible for the content. Such announcements or their
content are not necessarily endorsed by CaringBridge, Inc. or any
sponsoring agent. This information does not confirm that anyone
is or was actually a patient at any facility.