|
||||||
|
||||||
Thanks for visiting our guestbook!
This is an open guestbook. Please feel free to add an entry to the guestbook for others to read.If you do not see your entry after adding - please click on reload/refresh
- your browser may not have loaded the new page.
AOL Users: The AOL browser seems to have particular problems reloading
after this page is updated. Your Entry is probably already there
- it is just not being displayed. Close your screen completely
and re-enter it.
Click here to sign the guestbook.
Click here to go back to the main page.
Click here to view older guestbook entries.
Was interesting to come across your blog. My grandson was just diagnosed last summer 2014. I have been trying to research as much as I can to help out my daughter. I did also read about Genistein but because it comes from Soy my daughter won't consider. She has read negative material about soy. She keeps Griffin on Gluten and dairy free diet. He also has MPS III A. and is now five years old, non verbal, but a happy sweet boy all the same.
Bonnie <bonbonnh@metrocast.net>
Farmington , NH USA - Tuesday, September 15, 2015 11:49 PM CDT
Hi, I hope your family is doing well and I hope Jesse gets to go to Disney World. We have two children with Sanfillipo III B - Angela, just celebrated her 30th birthday, She is doing okay, we are very blessed with each new day. She has such a strong spirit. Will is 28 and doing well also. He is still able to smile and "jabbers" happy words now and then. Life certainly can be fun one minute and somber the next; and with each new problem, i try to think of ways to make them happy and content. Take care and God Bless you. Patricia
Patricia Edwards <oksandollar@yahoo.com>
Oklahoma City, OK USA - Saturday, October 4, 2014 9:09 PM CDT
Hi from quebec- hope everything is well with Jesse. Sorry for all the stressfull time you've had in june. We wish you peace and happiness.
Jonathan had a good summer. The seizure seem to have gone completely !!!! the worst for us is dealing with a bad scoliosis. Lots of smile for everyone ...Christiane
christiane parent <pierre.chayer@gmail.com>
la prairie, qc canada - Monday, August 19, 2013 7:07 PM CDT
Much love to Hero Jesse and you. What an inspiration you both are. Thank you for sharing your lives with us. Thank you for being there for Hero Mikey and me and for allowing us to share our lives with you as well.
Star <smileytexasmom@yahoo.com>
Tx - Tuesday, June 25, 2013 7:27 PM CDT
Hi patty and Jesse ,
Just stopping by to say hello sending hugs
www.caringbridge.or/visit/ashleedagenais
ashlee dagenais <ashes123@msn.com>
hamilton, ON - Tuesday, June 25, 2013 5:39 PM CDT
"Happy Birthday Jesse" may you have many more.
Wish the best to your family.
The McCannon's; Ted, Susan, Kasey & Chance
Kasey McCannon <kaseymorgan@mchsi.com>
Big Rock, IL USA - Thursday, May 2, 2013 6:04 AM CDT
Hi Patty and Jesse, this is the first time I've read a caring bridge page since Jasmin passed. A very emotional experience but lovely to read about You both. I'm shocked at the reaction Jesse had to that cream- it should be banned if that's what it can do. Glad J is over those horrid effects. Good news that your observations with the doctor came back clear. Much love to you all xxx
Ria <Riaheap@aol.com>
Gloucestershire, England , UK - Thursday, May 2, 2013 4:25 AM CDT
Hello Jessica I thank God for the wisdow that you have gain and share. I too pray for strength to keep carying out all the things we have to do in our late age. I also want to mention about the legal guardian issue, if you don't mine. I went throught the same thing for Karima several years ago. I remember calling, The Disability Law Center of PA, for help, and they connected me with a lawyer who work with me for Pro-Bono (I think this how you spell it). they charge no money, the only thing is that it took them two years to get the official court date, lots of paper work to sign, and doctor back up letters, but the court day finally happen, and it was over in ten minutes. I hope Baltimore has the same thing you should not have to pay anything.
Carol Rucker <crucker@rcn.com>
Upper Darby, PA USA - Saturday, March 23, 2013 4:45 PM CDT
Thank you for sharing so much information. We wish you many more days of laughter and happiness ! Those time are so precious ! Be strong - keep smiling and rely on your Lord ans Saviour to support you through all these trials times. Loves from Canada !!!
Christiane and Jonathan <pierre.chayer@gmail.com>
la prairie, canada - Tuesday, November 27, 2012 8:51 PM CST
Sending get well poofing wishes hope you had a great summer, been busy with mom helping her parents starting to re-do the yard with the beginnings of a ramp, weeded yesterday and on Saturday morning. Plus am looking into having a neurologist b/c of some issues with L side of head, limping a little on R ft while walking etc, JIC I keep a stroke sign journal plus I'm just watching it.
Sarah Nixdorf <srnixdorf@yahoo.com>
Naperville, Il USA - Monday, September 17, 2012 1:03 PM CDT
Hugs thinking of you plz sign my guestbook thnx :) http://www.caringbridge.org/visit/rachaelbuchanan1/guestbook thnx Hugs From Rachael
Rachael
- Friday, September 14, 2012 9:40 PM CDT
Looking strong Jesse. Stay handsome!
Jamie, mom to Jck <Jmeb17@hotmail.com>
Chicago, Il - Wednesday, August 22, 2012 6:02 PM CDT
Hi Patty and Jesse! I wish we still lived closer. I miss seeing you both at MPS gatherings. Give Jesse a hug for me!
-Robin
Robin Piefer
- Friday, August 17, 2012 9:34 AM CDT
Hi Jesse
I care about you, I believe in you, I am your friend, You are always in my thoughts and prayers. I will always support you, and be one of your many fans.
Here is a poem I have made for all of my CB friends who are fighting a battle.
My Brave Hero:
My Brave Hero is someone who is fighting a battle.
My Brave Hero is strong,
Even when things go wrong,
My Brave Hero is someone who fights like a champ,
My Brave Hero Never Gives Up Never Gives in
My Brave Hero fights with a smile and a grin,
My brave hero Fights till they win,
My Brave Hero has a lot of courage,
My brave Hero is not afraid to shed a tear
Even when they have a fear,
My Brave Hero lives life to the fullest,
My brave Hero is my friend
My Brave Hero fights until the end
My Brave Hero fights till there is no more pain
My Brave Hero fights untill their free,
My Brave Hero fights untill they are in a safe place,
My brave Hero fights untill they have won their race,
It's true
My Brave Hero is You!
Who invented fire? Some bright spark
http://www.caringbridge.org/visit/champ291
Jenna <fighterchamp9@aol.com>
Kamloops, BC Canada - Monday, July 23, 2012 9:59 PM CDT
Hello Patty, Jack and Jesse
I enjoy your update and what great pictures. I which I knew about the get together in Sellerville since I live near the city of Philadelphia. I would love to have met you and other even thought we are MPS VI. My brother keeps begging for me to move to Baltimore. I am thinking about it a lot, because I do need physical and mental support. He really don't understand MPS. I often think about moreso if I was in Baltimore we proberly could help each other in some helpful ways. You amaze me for all the things you do for Jesse. God Bless You and your family I Pray for your continue strength. Good Bye. Feel free to call me anytime 610-734-1037
Carol rucker <crucker@rcn.com>
Upper Darby, PA USA - Thursday, July 12, 2012 4:22 PM CDT
Great Pictures! Love you Jesse!
Valerie Barnett <val429@gmail.com>
Bloomington, IL USA - Saturday, July 7, 2012 12:20 AM CDT
Hi Patty & Jesse, great to see Jesse looking so well! Loved looking at all the photos:-)))) Sending love & hugs to you, from Louise (Georgia's mum) xxxl
Louise Lewis
Chepstow, monmouthshire United Kingdom - Saturday, July 7, 2012 11:55 AM CDT
Hi Patty!!! Thanks for sharing updates on Jesse! We got the Tian Ma today and are excited to begin this regimen for Chloe! Love to you all, will talk with you soon :-)
Jodie G. Key <jodiekey@yahoo.com>
Thomson, GA USA - Thursday, July 5, 2012 4:55 PM CDT
HI Patty and Jesse ,
It's been pretty hot here in Ontario , sopose to be almost 40 degrees celciius not used to that kind of temp , hope you guys are trying to saty cool, will check back soon
www.caringbridge.org/visit/ashleedagenais
Ashlee <mwccamper@yahoo.ca>
- Thursday, July 5, 2012 4:00 PM CDT
I happend to be looking on line for info on MPS3, because a friend of mines daughter has been recently diagnosed. She is 4yrs old and I was looking for something possitive. I will referr him to your sight as this is the most uplifting one I have come across. I had no one to really turn to when my son was Diagnosed with MPNST and passed away only at the age of 16. Although MPS3 and MPNST are totaly different I just wanted my friend to find a person he can relate to and ask questions if needed.
Thank you so much for your possitive outcome and may God Bless you and your son.
Karinsa Viramontes <vkarinsa@yahoo.com>
Longview , Was USA - Thursday, April 12, 2012 10:52 AM CDT
Hi Jesse
I hope you have a good week full of joy, happiness and smiles.
You will be in my prayers, and I will continue to keep you in my thoughts,
What is courage? What defines a courageous act? It is said that the brave and cowardly person are both fearful. However, it is the brave one who faces his fear and does what needs to be done. We will be faced with many things that scare us throughout our lives. How can we become the kind of people that face our fear and do it anyway? Human growth takes place when we take small steps. Each time we face our fears we become more of the courageous person that we would like to be.
You have courage and bravery!
The joke of the day:
Why aren't football stadiums built in outer space? Because there is no atmosphere
http://www.caringbridge.org/visit/champ291
Jenna <fighterchamp9@aol.com>
Kamloops, BC Canada - Monday, February 20, 2012 7:03 PM CST
Thank you those who are standing in prayer with us. The older our MPS kids get the harder it is for us as families. The reality of "no cure" stares you more in the face every day. The smiles and joy of our children seem to be less and your heart mourns for their joy to return. The silent days of no voice from your child, the days more often without a smile, just a blank look and eyes that look to you in wonder are more than any family should bare. Longing for even more smiles amd laughter, these things would have my heart rejoicing. Thank you for stopping in and reading and praying in support. xoxoxox
Patty, Jack and Jesse <wordinedge@aol.com>
Baltimore, MD USA - Wednesday, February 8, 2012 4:49 AM CST
it sucks that you are really no closer to answers but i will continue to pray for you and him
Amanda St. Dennis <csi_hope@hotmail.com>
Canada - Wednesday, February 1, 2012 7:22 PM CST
May God's richest blessings pour out upon you and Jesse and your family. You are truly an inspiration, with the faith,courage, perseverance, grace and dignity with which you have raised your son and faced the challenges that come with his health issues. I pray that God will continue to guide and strengthen you as you seek to provide the best quality of life and purest, unconditional love for your son. You are an incredibly amazing woman and I am sure that your faith will continue to be rewarded.
Deb Cooke <deb.cooke@ymail.com>
Canton, NY United States - Thursday, December 22, 2011 10:46 PM CST
"...Add to your faith virtue, knowledge, self control, perserverance, godliness, brotherly kindness and love. For if these things are yours and abound, you will be neither barren nor unfruitful. " 2 Peter 1:5-8
Much love to you and your wonderful family, Patty. xox
Tammy Harrington <t.lynn28@rocketmail.com>
E. Providence, RI USA - Thursday, December 22, 2011 10:08 PM CST
Hi Patty & Jesse, thanks for the update! I hope you can sort Jesse's gall bladder issues, you've done really well so far! Loved looking at the photos, Jesse is such a handsome young man. Continued prayers for your mum Patty, she's come such a long way in her recovery. Thinking of you all, sending lots of love & hugs, from Louise, Jon & Georgia xxxxxxx
LOUISE Lewis
Chepstow, monmouthshire United Kingdom - Monday, December 12, 2011 4:15 AM CST
Hi Patty and Jesse! Just wanted to say "hello" and wish you a Merry Christmas. Prayers for Jesse with these most recent issues.
Robin Piefer
- Sunday, December 11, 2011 11:40 AM CST
Just stopped in to take a look. Have a Happy Halloween.
Andrew Charest
- Saturday, October 29, 2011 11:16 PM CDT
I'm glad to hear that Jesse is feeling better. Even though it was so raw outside, it looks like you managed to have some fun in the living room! Hope to see all of you soon!
Jen Corcoran
- Saturday, October 29, 2011 9:13 PM CDT
Hi Patty- I have experienced many of the same "moves" with John. He displays them quite often esp. the stiff finger to the mouth and the rubbing over the eye, jerky outstetched arms. He has not however, done them for hours on end. How exhausting for you and him. Very happy to see him feeling better!! You are a great Mom, Jessie is lucky to have you. God Bless you both...Love Diane
Diane Dalton <ddal949@hotmail.com>
lake Forest, CA USA - Sunday, October 23, 2011 0:29 AM CDT
Patty,
I read your latest updates. I just wanted to share something we found for Kellie as she seemed to have gone through a very similar difficult time 2 years ago. We are working with an Ayurvedic/Chinese medicine doctor who put Kellie on two liver tinctures with many herbs, but the primary ones are Rehmannia and Bupleurum/Dragon Bone. I can sure give you the entire barrage if you want them.
It really has done wonders for Kellie. All of the pain and spontaneous crying are completely gone. We, of course, screwed around with it and added something for her kidneys, which utterly backfired and her sleep (she slept every night for five months) went haywire. The crying never came back, however. We have finally gotten her back on the original formula for the past 3-4 months, and she is again sleeping – not perfectly – but close.
I am just telling you this to give you an alternative look. It is, of course, possible that Jesse is suffering with something completely different. Our thoughts are with you and your “big boy”. He’s adorable and miraculous.
-st
Sallie Taylor <sallie@boulderrealestate.com>
Boulder, CO USA - Friday, October 21, 2011 1:45 PM CDT
OMgosh Patty, I hope you found out what is wrong today!!! I felt so bad watching those videos of Jessie. He clearly seems in some sort of pain. How did the ultra sound go??
Sheryl Hall
- Wednesday, October 12, 2011 6:48 PM CDT
Hi jesse and family,its been a long time since i saw my buddy jesse. Jesse no matter what i still think about u and i do miss u. Take care of my boy. Love u jesse!
ms.kay <kaycoachbags@yahoo.com>
baltimore , m - Tuesday, October 11, 2011 8:57 PM CDT
wow..i am truely humbled by all that you do..
channabrennon
middletown, ny usa - Sunday, October 9, 2011 8:27 PM CDT
Hey Patty, Gerry Taylor here. I have your site as one of my mother in laws favorites. She wondered if she could send you a letter. She's not as thrilled with email although she does use it. Send me your addy to gerry@40westrealestate.com if you could. Hey, let me know if your giving Trehalose to Jesse...I'm sure you have looked at it.
Gerry <gerry@40westrealestate.com>
Boulder, CO USA - Wednesday, July 6, 2011 7:33 PM CDT
Hi Patty ,
Love the new pictures, Glad Jesse is doing so well. Hope the rest of the family is recovering quickly. Prayers for you Patty, so that life becomes at least a little easier. xxx
Annmarie Gauci <acgauci@optusnet.com.au>
Sydney, NSW Australia - Wednesday, June 8, 2011 5:26 PM CDT
hey this is a Amanda from facebook love the page and the update hope your husband gets better sooon
Amanda St. Dennis <csi_hope@hotmail.com>
Canada - Wednesday, June 8, 2011 4:27 PM CDT
Hi Jesse, looks like you had a great 16th birthday :)
Hugs from Canada
www.caringbridge.org/visit/ashleedagenis
Ashlee <mwccamper@yahoo.ca>
- Sunday, May 15, 2011 3:10 PM CDT
Hi Patty & Jesse, I love the new photos! thanks for sharing. Looks like Jesse had a wonderful 16th birthday! Patty, I'm so glad that your mum is making a good recovery, I hope she will be home very soon. Good luck with the new supplement, it sounds wonderful. Lots of love to you all, from Louise, Jon & Georgia xxxx
Louise Lewis
Chepstow, UK - Sunday, May 15, 2011 12:00 AM CDT
Happy Birthday Jesse, love Gerry, Sallie and Kellie Taylor
Gerry <gerry@40westrealestate.com>
Boulder, CO USA - Monday, May 2, 2011 7:55 PM CDT
Patty,
I had not checked in on my Graham's Caringbridge page in awhile, but was so touched when I read the comment you left. Thank you for being my cheerleader...and believe me...I am now shaking a pom pom or two for you too. Although our boys do not have the same disorder, we both know what it is like to raise a special needs child and have heard the words "there is no cure", both told that our boys will die as a child...that we will outlive them. We become members of a club that no one ever wants to join...yet here we are.
Not only do we have to learn to somehow digest this news, our children have a disorder that is so rare that noone has ever heard of it. It is something that most people don't understand and sometimes don't even realize the severity of.
Your Jesse is going to be 16...what a blessing that God has given you this time to spend with your son...beyond what the doctors told you. Every day is so precious and just goes to show that it is all in God's hands and His will be done.
Thank you for stopping by my 'Angel' Graham's page and for leaving such a heartfelt message. I must say that I would do just about anything to have my son back and to have never had to walk down this road, but I am so very thankful for all the amazing Mommas and Daddys I have come to meet on this journey.
All God's Blessings to you, to Jesse, and to your family. I have not read all your entries, but I will be back to get caught up and to stay in touch...and to be your cheerleader.
Sending you some very special 'Angel' Graham blow kisses (that is how my Graham gave kisses) to you.
Tracy
'Angel' Graham's Momma
Graham Whitney
7/14/99 - 5/22/09
Dx Infantile Refsums Disease (IRD) a Peroxisomal Biogenesis Disorder (PBD)
p.s. I am in the begining stages of creating a non-profit in honor of my son. One of the projects I would like the Foundation to eventually fund is "Mark of an Angel" that will help cover the cost of headstones for Child Angels. I hope that you are NEVER in need of this service...God willing. But please come find us on Facebook at www.facebook.com/markofanangel and "Like" our page. You will be updated on the status of our Foundation and we can always use more prayer warriors. Thanks again.
Tracy Whitney <thewhitneyfamily@yahoo.com>
Lake Forest, CA - Thursday, April 21, 2011 0:55 AM CDT
Patty, Thank you for sharing Jesse with us. Susan
Susan McCannon <susanmccannon@mchsi.com>
Big Rock, IL USA - Monday, March 21, 2011 1:26 PM CDT
Hi, I came across your story from the WJZ post on facebook. I applaud your strength and the fact that you are fighting to help your son and others...I will pray for you and your family.
T. Robertson <trobertson@myofficeprofessionals.com>
- Friday, February 11, 2011 8:23 AM CST
Thank you! We are 1st for the money for a cure. I am mostly dumb, but my Emily may be eligible for clinical trials. I am scared for that, but I think we're all scared! Please don't give up hope.
Keith Sawyer <o2bkeith@yahoo.com>
Waterford, CA USA - Tuesday, January 25, 2011 5:46 PM CST
Hi Patty & Jesse, just stopping by, as I was thinking about you today:-) Hope you enjoyed christmas. I love the new photos of Jesse, he looks so handsome & well!! New years's eve will soon be upon us, so I'd like to wish you all a very happy, healthy & prosperous new year! Lots of love, from Louise & Georgia xxxxxx
Louise Lewis
Chepstow, UK - Wednesday, December 29, 2010 2:01 PM CST
Patti, I think of you and Jesse often and pray for assistance for you. You are so wonderful and work so hard. God bless you and your family.
Mary Lynn (Taormino) Twiddy
- Friday, November 19, 2010 2:59 PM CST
Hi Patty & Jesse, thinking of you & I agree totally, it's so hard not knowing what's wrong - if only they could talk:-~((( I'm sure you'll get to the bottom of this & Jesse will soon be back to his usual, happy self:-))) Lots of love & hugs, Louise & Georgia xxxxx
Louise Lewis
Chepstow, UK - Tuesday, November 2, 2010 4:13 AM CDT
Patti were are thinking of you
in hopes that you can find out what is going on with Jessy
Anne and Sebastien
anne cairns <buzz.cairns@sympatico.ca>
markham, ont canada - Monday, November 1, 2010 8:26 PM CDT
BENDICIONES.
DYLIANNE
Santiago, Chile - Tuesday, October 19, 2010 6:19 PM CDT
Hi Patty, this was my first time visiting your site. Thank you for sharing, it's beautiful to see Jesse up and moving around! Sending prayers for all of you! I use this quote ALL the time, but it once again is appropriate: "The Will of God will never take you where the grace of God won't protect you!" Hang in there, you are one of the strongest women I know!
Melissa Marcotte <mallnfive@aol.com>
- Tuesday, September 21, 2010 10:50 PM CDT
Hi Patty and Jesse:
I am Mom to my 9yr.old son John who has MPS3(a). He looks so much like Jesse It is eerie. You are doing a wonderful job with him. He is blessed to have such a remarkable Mom to see him through his journey. MY son was just diagnosed formally this year. I would love to speak with you about a few medical issues and treatments you have tried. When you have the time please email me. God Bless you and your family :)
Diane Dalton <ddal949@hotmail.com>
Lake Forest, CA USA - Friday, September 10, 2010 4:34 PM CDT
Hi Patty & Jesse, just stopping by to let you know that we're thinking of you & sending our love & prayers that things get better for you soon. Thank god you have A/C now, what a wonderful gesture from your friends. Loads of love & hugs from Louise & Georgia xxxxxx
Louise Lewis
Chepstow, UK - Sunday, September 5, 2010 3:49 PM CDT
Patty, I just read your July 11th update .. so sorry things have not improved on the economic outlook for you and Jack...I know that is "scary." But today reading your journal, reminded me of the poem by Edna Massimilla, "Heaven's Very Special Child" -- you were chosen to be a "special mother" because God knew you could handle it .... what a great job you do! "My" Mackenzie has not been able to walk on her own for a good while...but she does love the attention (hugs, kisses and being talked to)-- I'm sure her parents were "especially chosen" just like you...look at the difference that you all are making in the MPS World.....you have great writing talent and all that medical knowledge you are acquiring and sharing.
Hopefully, something good will happen soon.
Becky Clarke <vabeckyclarke@verizon.net>
Newport News, va USA - Sunday, July 25, 2010 5:10 PM CDT
Hello Patty, just stopping ny to say how much I admire your continual dedication, strength, and optimism! Your a wonderful mother, Jesse is blessed. Best, Jamie mom to Jack MPSII
jamie <jmeb17@hotmail.com>
denver, co usa - Monday, July 12, 2010 9:09 PM CDT
I know it's hard but i pray things will get better. Is jesse not qualified for medicaide. Zuli get SSI and medicaide. But i guess it is different in each state.
carmen zuli's mom <margieapple@yahoo.com>
interlachen, fl - Thursday, June 24, 2010 11:49 AM CDT
Hi Patty,
I woke up thinking of you and Jesse a few days ago and realized that I hadn't checked this website for a while. I am so sorry to hear about all these troubles going on right now. It is heartbreaking. I'd like to donate a small contribution to your family. Can I have your address so I can mail off a check? Joanne Huff, Sasha's Mo
Joanne Huff <joannehff@yahoo.co>
Warren, NH - Tuesday, June 22, 2010 7:52 AM CDT
Hi Patty, I will try to send some help this week. Many prayers for you aal. I long to see you all again, you know Jesse has our hearts here in Alabama!!
Misty Luthcke <mluthcke@netzero.com>
Indian Springs, AL US - Sunday, June 13, 2010 4:02 PM CDT
Hi Patty! I have many fond memories of babysitting Jesse when he was little. It's so nice to be able to keep up with how he's doing through his page. My thoughts and prayers are with you and your family. Many blessings! -Amanda
Amanda Old <amandacold@yahoo.com>
San Diego, CA - Wednesday, April 14, 2010 9:26 AM CDT
Just stopped by to give you and Jesse a hug!
Chris(MPS2) Slavik
Brecksville, ohio usa - Wednesday, April 14, 2010 7:56 AM CDT
Hi Patty & Jesse - just to let you know that we stopped by today to read how Jesse is doing. Thinking about you all & praying that you get some good news soon. Many, many hugs from us xxxxxx
Louise & Georgia xxxxxxxxx
Louise Lewis
Chepstow, UK - Sunday, April 4, 2010 10:47 AM CDT
Great update Patty! Praying you are able to help Jesse with his pain. Wish we could see you all. Nicole speaks of you often. Love, Misty
Misty Luthcke <mluthcke@netzero.com>
Indian Springs, AL US - Friday, March 5, 2010 8:01 PM CST
Hi, Patti, I am new on CaringBridge. I am the grandmother and caretaker of my two grandsons who just recently have been diagnosed with MPS III Type A. They are ages 6 and 8.
It has been an inspiration reading Jesse's guestbook. I am trying to find out how to help my two angels and I have learned so much from reading about Jesse. He is such a nice looking young man. He reminds me so much of my little Isaiah (8 yrs old). Christian (6 yrs old) suffers from behavioral problems. I have been caring for them for almost two years now and love being with them. They give so much love, I know that God is watching over them and protecting them. I am going to start trying some of the treatments that Jesse has been given in hopes that I can make life better for them. I thank you so much for sharing your times with Jesse. God bless you and Jesse. I know what a special little guy he is.
Geraldine Stephens <stephensgerrie6@aol.com>
Lebanon, MO USA - Tuesday, March 2, 2010 10:16 PM CST
Hi Patty
Your strength is encouraging. You know, we all have gifts
when we receive and accept the gifts of the Holy Spirit. We are given wisdom and that is what you have . . .wisdom.
In the book of Acts, the first chapter
the bible tells us
when we receive the gifts of the holy spirit
we will be called to WITNESS
being a witness is not sharing what you do for god
but, sharing what God is doing in your life
by you sharing what you are doing in Jesse' life
you are witnessing to all of us
how God is working in your life
how god is giving you the courage
the GRACE
his wisdom
knowledge
and most of all . . . his mercy
you have what it takes, by the grace of god, to digest all of the info and make good of it
and God has given you that grace
and you are sharing it with others
and that is what God calls us to do
thank you for sharing God mercy, his love and his grace with all of us
Love you,
Anne
Anne Schexnaydre <annebecnel@aol.com>
Norco, LA - Sunday, January 10, 2010 3:08 PM CST
Hi, Patty and Jesse...As always, I enjoy reading your reports and seeing your photos. I missed seeing you over the holidays, and hope it won't be too long before we're able to talk to or see one another! I continue to hold you in my prayers.
Stacy Bryan
Baltimore, MD USA - Monday, January 4, 2010 9:58 PM CST
Hi Patty,
Thank you for this update, I think of Jesse often and get worried when I don't see a new post here for a while.
I love your pictures from the conference and so wish I could have been there. It looked like a lovely time and I'm glad you were able to see your sister and her family!
I am praying hard for Jesse right now after reading this update. It is so good that this possible hydro was discovered right away, and I'm hoping that your remedies are already working their magic!!!
Please keep us posted and know that so many are praying for you and Jesse right now!! Fondly, Joanne (Sasha's Mom)
Joanne Huff <joannehff@yahoo.com>
Warren, NH - Monday, January 4, 2010 8:10 AM CST
Hi Patty & Jesse, wow, gorgeous photos! Jesse looks so grown up now! So glad that you were both able to go to the conference, thanks for sharing the photos.
So sorry to hear about Jesse's latest issues - I'm sure you'll get to the bottom of it Patty. Sounds similar to Georgia's issues earlier this year (with all the hyperventilating etc). Sending loads of love & hugs, Louise & Georgia xxxx
Louise Lewis
Chepstow, UK - Sunday, January 3, 2010 3:55 PM CST
Hello Patty,
Connie and I thank you for the update, it's great to hear you and Jessie were able to attend the conference and spend some time with your sister. Please know that our thought's and prayers are with you.
God bless you and yours,
Boyd and Connie Mitchell
Boyd Mitchell <boyd.mitchell@cbn.org>
Bridgeville, DE USA - Saturday, January 2, 2010 8:16 PM CST
I am sorry to read all this is happening.Remember when we had the same issue with Julie on a flight back in November.We kept her on motrin for several days after and it seemed to help her.Dr.'s never found a reason for her either. I think it was a combination of things for her, causing her pain.She kept accusing us of hurting her head and ears as she screemed for 1hr. and 30 min. of a 2 hour and 15min. flight.I thought they were going to make an emergency landing and throw us off the plane!Terrible situation for everyone aboard.I am glad you had a good time at the conference and your Christmas was happy !!Happy New Year to you,Jess,Jack & Stephen!!!
Sheryl Hall <212224@msn.com>
NJ USA - Saturday, January 2, 2010 6:55 PM CST
Pat,
Thanks for the update on Jesse. My prayers are with both of you.
Melody Baker
Hereford, MD USA - Saturday, January 2, 2010 4:09 PM CST
Hello. I recently found out my son has mps 3A and would like to know how you suggest we obtain the genistein for him. We want to get started as soon as possible. God Bless You All!!
Allison <baldobunch04@yahoo.com>
navarre, fl u.s. - Tuesday, December 29, 2009 8:33 PM CST
Wishing your family a Merry Christmas and Happy New Year!
www.caringbridge.org/visit/quiltsofhope
Jaime <aquiltofhope@aol.com>
Largo, FL - Wednesday, December 23, 2009 9:18 AM CST
Thanks for the encouraging words and tips about the flight...I have been a little nervous about flying...Especially with Ian. We decided we would just give him a little snack before the flight to avoid any of the changing issues. . . . maybe he won't potty for the short time of the flight lol.
Shelly <maddox83@yahoo.com>
Ama, TX US - Saturday, December 12, 2009 11:01 PM CST
Hi Patty and Jesse,
Glad Jesse is doing so well in his ne school , and tha everyone's health is good.
Hugs from Ontario
Ashlee www.caringbridge.org/visit/ashleedagenais
Ashlee <mwccamper@yahoo.ca>
- Wednesday, December 9, 2009 9:33 AM CST
Hi hope all is still well as your update and school is sorted Jesse deserves the best! Hugs Laura and Will xxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Saturday, November 28, 2009 12:59 AM CST
Hi Patty,
So good to see Jesse enjoying himself! We are also having positive affects from genistein after about 7 months of use.
Good Luck and Best Wishes,
An
An Tootill <an.tootill@gmail.com>
Seattle, wa usa - Friday, October 16, 2009 11:56 AM CDT
I am glad you are doing so well Jesse, I think of you and your Mom so often and I also will think of your Grandmother now to and say a prayer for her well being.
God Bless my friends, take care,
Love,
Erica www.caringbridge.org/wi/ericathiel
Erica Thiel <thielerica@gmail.com>
WI - Friday, October 2, 2009 9:43 PM CDT
So much good Jesse news made my day, Patty. We will keep your mom in our prayers.
Jennifer Corcoran <jen_j_corcoran@hotmail.com>
- Friday, October 2, 2009 9:14 PM CDT
So very happy to read Jesse is doing so well again!!I hope you can get him in his new school soon. I am sorry to read you Mom is not doing so well.I didn't know. I pray she can leave the hospital soon and carrie on with her life. Take Care Sheryl
Sheryl Hall
- Friday, October 2, 2009 3:14 PM CDT
Hi Patty, Once again you lovely and I am so happy to hear things are going well with Jesse. Good news is what we need once in awhile. I hope you make it to Florida and you have a wonderful time. Thanks for helping as many parents as you do. YOu are a blessing to all,
Love Rosemarie
Rosemarie Veliz <rveliz@ptd.net>
Newton, NJ USA - Friday, October 2, 2009 9:42 AM CDT
Hi Patty,
I just wanted to say hello and see how Jesse's been doing. I saw him catching a cab ride on Facebook for his first day of school. I think that's great, he deserves to go to school in style!! Love to you all, Joanne
Joanne Huff <joannehff@yahoo.com>
Warren , NH USA - Thursday, September 3, 2009 8:42 AM CDT
Hi just checking in on you all -hope you managed to get some sort of break this summer! I'm with you on the menpause issues!! Hugs Laura and Will xxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Wednesday, August 26, 2009 1:17 AM CDT
I just saw the blog page. Nice! Hope you guys are well.
Shereese Maynard-Tucker <shereese@globalmedicalandhealth.com>
baltimore, md - Wednesday, August 19, 2009 8:14 AM CDT
How do you get journal updates here?? I can't figure it out. . .it's probably something simple, but I can't get it lol.
I am glad you wrote in my guestbook. . .we have been on the gfcf diet for 2 years already. I mostly put that up there for friends and family to read about it...they always ask, and I can't find a short way to tell them lol. I couldn't live w/o enzymes and probiotics! THEY ROCK lol. How is Jesse lately? I have been wondering if he has recovered fully from his last seizure.
Shelly <maddox83@yahoo.com>
Ama, TX usa - Tuesday, August 4, 2009 2:29 PM CDT
Hi Patty and Jesse, I haven't seen a new update for a little while so I hope things are OK. I know how tough it can be when both money and time feel too tight. Just wanted you to know I'm thinking of you both! Joanne (Mom to Sasha)
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Tuesday, August 4, 2009 12:57 AM CDT
Hi Jesse!
Looks like you enjoy driving that boat, but don't let them say you drove it to where it is in the picture - running aground will ruin any captain's day.
Praying for you and your family.
www.caringbridge.org/al/mamieadams
Mamie's Daddy
Huntsville, AL USA - Monday, July 20, 2009 10:22 PM CDT
Just was wondering how Jesse was doing, I was a little worried about him the last time I read the page. . . . about his graduation.
Shelly <maddox83@yahoo.com>
Amarillo, tx us - Wednesday, July 15, 2009 8:03 AM CDT
Enjoyed reading about your story. My daughter, Mia, is 16 and has Sanfilippo.
Kimberly Pruett <sed84@hotmail.com>
Vacaville, CA USA - Sunday, July 5, 2009 11:46 AM CDT
Hi Patty and Jesse,
I am SO happy to hear that Jesse returned to normal after the last seizure. I knew he would, he is so strong! Way to go Patty, you take such wonderful care of him through love, understanding and good nutrition!!! All the best to you both, Joanne
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Wednesday, July 1, 2009 12:01 AM CDT
Hey! I am just ecstatic to hear from you on here! I watched Jesse's video's and they just touched my heart!! What an awesome kiddo you have there :) I am so proud for you guys!!
Shelly Maddox <maddox83@yahoo.com>
Amarillo, tx usa - Thursday, June 25, 2009 2:39 PM CDT
Hi Patty and Jesse,
I am so glad to see Jesse's 8th grade graduation video. He looks wonderful. Hope he will do equally well in High school.Vidya is of the same age as Jesse and after reading Jesse's story, I find there is so much in common between our lifes. We undergo the same kind of problems bringing up an MPS child. My wife and I cannot take a morning walk together, we take turns visiting friends or attending functions which we mostly avoid, coping up with seizures, drooling, hyper activity etc. By God's grace Vidya is still walking as Jesse is, but we need to coax her by holding her hand.She messes up with her food and hence we now feed her. I think the MPS children are quite strong and it requires considerable effort to lift them and take them to bath and toilet. How is Jesse communicating with you. Does he talk or show comprehension ? Sadly Vidya does not. Please update me with Jesse's progress.
Kasturi Rangan ( Vidya's father) <kasturi_sys@satyam.net.in>
Bangalore, India - Monday, June 22, 2009 7:10 AM CDT
Patty the pictures are beautiful and videos too. I am so proud of Jesse. I am so sorry to hear of this last seizure. I hate seizures too. It also broke my heart to read about Jack and you going two ways. But I think that always happens for periods of times and God will help you both to now lose what you have. I know how hard you pray and how much you TRUST. TRUST in Him and you will be okay. Your road to Calvary has been a long one but it will pay off in the end, and you know that . I love you Patty,
Love Rosemarie and Chase
Rosemarie and Chase 17 yrs old with hunters <rveliz@ptd.net>
Newton, NJ USA - Saturday, June 13, 2009 6:17 AM CDT
Patti, I am sorry I am soo late getting on your site. I agree you and Jack do need to be able to go places together. I will be praying for this as well as the right school for Jesse. Love ya!
Valerie Patterson <vjpatterson@knology.net>
Huntsville, AL Madison - Thursday, June 11, 2009 4:24 PM CDT
((Patty)) Many hugs to you, Jesse looked so handsome in his tux. Sorry Jesse had a seizure days before his OSCAR debut:( ..I hate seizures and MPS too...Praying Jesse is back to his old self soon...PLUS..He's going to HIGHSCHOOL..How cool is that:) hugs
Therese ^^Sara ^^ & Danielle <trid2b4@sbcglobal.net>
Morris, IL USA - Monday, June 8, 2009 10:09 PM CDT
Hi Patty and Jesse,
I'm so sorry to read that Jesse was not up to his normal self after this illness and seizure. Perhaps the virus itself also took a toll. I'm sure that when the two things have well and truly passed Jesse will perk up again. Daniel was also quite low after a longish diarhoea virus but he gradually perked up again. He looked wonderful and so smart even so. Bless him.
Many prayers,
Elizabeth
Elizabeth Schuepbach <peschuepbach@sunrise.ch>
Meikirch, Switzerland - Monday, June 8, 2009 1:22 AM CDT
Oh Patty, I hate the "feeling" I get from your post, you are our rock, you can't get down. Jesse looks wonderful and I know that you are so very proud of him. As with this dreaded disorder, one step forward and two back. I know that this was an emotional time for you...the future holds no promise for our kids and so much for others. It is treterous! We will not make the conference, it would have been our first...oh well maybe another time. Prayong for you and our sweet Jesse, Love Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Sunday, June 7, 2009 10:52 PM CDT
Thank you for posting the photos and videos. Jesse is so handsome. I was so sorry to hear about the seizure. My heart breaks for you and I am sending you my hugs over the internet.
I loved hearing about Jesse's future plans...I certainly believe he has already reached movie star status! I would watch any movie he is in!
Love you!
Donna Kay and Tyler
www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA USA - Sunday, June 7, 2009 10:32 AM CDT
Hi Patty & Jesse, thanks so much for sharing the videos & photos. The one of Jesse walking the red carpet made me cry! He looks amazing, even though I know he wasn't at his best. Patty, you should be so proud of him, as I know you are & I know how stressful this has been for you, particularly with the seizure, believe me, I know how that feels! Please give Jesse a huge hug & kiss from Georgia & me, & of course, for you too! Take care, lots of love, Louise & Georgia xxxxxxx
Louise Lewis
Chepstow, UK - Sunday, June 7, 2009 4:15 AM CDT
WAY TO GO JESSE!!!
Love the graduation videos. Nice job Jesse. He is looking really handsome in his tuxedo. Song in slide show made me cry. So sorry Patty, Jesse had a bad seizure. I am with you 100% hating MPS. I hate seizures. It hurts what it had done to Abeerah. I hope Jesse recover soon. Keeping you in my prayers today and always. ((((HUGS))))
Tayyaba Beg <Tayyaba@helpourgirls.com>
NJ - Sunday, June 7, 2009 0:36 AM CDT
Jesse you are our inspiration!! Patty I am sorry this seizure took such a huge toll on Jesse right before graduation :( . But he will bounce back in no time stronger and more alert then ever because I know you are already researching the next approach to keep those stupid
seizures at bay even longer this go around. Give me a call and let me know what you come up with!! (((HUGS)))
Stacey and Lucas http://www.caringbridge.org/visit/hopeforlucas
Stacey Montgomery <lewNstacey@yahoo.com>
Cedar Rapids, IA - Saturday, June 6, 2009 10:12 PM CDT
Congratulations Jesse, you are going to high school, woohoo!!!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Saturday, June 6, 2009 8:28 PM CDT
Hi Patty, Jesse,
All the best for your 8th Grade graduation! Another year already! Haven't you grown. I love the new photos too.
So glad you got to see that doctor. Sounds a bit like ours in the East of Switzerland. Wishing you lots of success with the gradual supplement changes and it's wonderful news about the BMs!!
Take care,
love
Elizabeth and Daniel
Elizabeth Schuepbach <peschuepbach@sunrise.ch>
Meikirch, Switzerland - Thursday, June 4, 2009 4:42 PM CDT
Pat,
Thanks for the update. I enjoyed the pictures.
Melody Baker <Rescue4paws@aol.com>
Parkton, MD USA - Monday, May 25, 2009 10:57 AM CDT
Hi Patty, I really enjoyed looking at all of the new pictures and reading your update. Jesse looks like he has grown so much since last year. Congratulations to Jesse on his Special Olympics award. I think there should also be a medical and natural healing research award for his mom!!!! How in the world do you keep all of this stuff in your head?
Catherine Abernathy <cabernat@truvista.net>
Chester, SC - Sunday, May 24, 2009 8:37 PM CDT
Hello, Patty & Family!
Glad to hear you guys are doing well. I hope you do make it to Florida for the Disney conference ... we have already made reservations and have our airline tickets purchased! We're going from Monday to Monday (Dec. 14-21) unless we decide to return on that Saturday instead. I hope to get to meet ya'll there! :)
Have a good weekend! Hugs to you and Jesse!
Mieke Embry (mom to Luke, MPS-IIIA) www.caringbridge.org/visit/lukeembry <embry10198@windstream.net>
Moody, AL USA - Friday, May 22, 2009 11:09 PM CDT
Hi Jess, I happy to read you enjoyed your B-day. In fact it seems you are doing well in most aspects of your life.Maybe 14 is your lucky number(smile)enjoy!!!! I know just what you mean Patty about all your feelings on working.It's a bitch. To much emotional turmoil,we all (Mom's) know nobody can do it as well as we can,we even usually enjoy it !!!!!!!
Sheryl & Family
Westville, NJ USA - Tuesday, May 19, 2009 7:04 AM CDT
Hopefully the economy will turn and you will once again become the MOM you want to be. May God bless you one and all.
Boyd & Connie Mitchell <bmitch2@comcast.net>
Seaford, DE USA - Monday, May 18, 2009 3:01 PM CDT
Hi Patty & Jesse! Gorgeous photos, Jesse is doing so well! Patty, you are a fantastic mum, don't be so hard on yourself, though i do understand how hard it is when you work - so sorry that I missed Jesse's 14th birthday, think we must've been in hospital then. Give Jesse a huge hug & kiss from Georgia & me. Lots of love to you all, xxxxxx
Louise Lewis
Chepstow, UK - Sunday, May 17, 2009 3:41 PM CDT
Hi Patty and Jesse, I am so glad that you seem to have him "moving" a little better. I do not see how you do it all! Please don't feel guilty you are doingthe best you can dod for your family. Wll wears me out daily and I am too tired to do anything without working! We love you both, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Sunday, May 17, 2009 3:27 PM CDT
Hi Patty and Jesse. I'm so happy to here from you guys. I hope all is well. I love this web page. I also love all the entries. Jesse should know how much he is loved by us all. Patty, you are the greatest mom- bar none. Love you guys.
Shereese <shereeset@aol.com>
Baltimore, MD USA - Sunday, May 17, 2009 5:24 AM CDT
Love the picture!
I am so glad Jesse had a great Bday, I wish we could have been there.
That is fabulous news about the DAN doctor, I agree more doctors should be on board with a BioMed approach, we need to keep these kids strong and healthy....preventative health! Thanks for sharing the info.
Wow special Olympics medal winner! Way to Go, we have to put your picture on a Wheaties box.
Tyler is getting a bike on Friday, maybe one day we can ride together.
Love you,
Donna Kay and Tyler
www.caringbrdige.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA - Saturday, May 16, 2009 10:37 AM CDT
Love you guys!!!! I am all for the " MPS community " where we could be neighbors :) !
Stacey and Lucas
http://www.caringbridge.org/visit/hopeforlucas
Stacey Montgomery <lewnstacey@yahoo.com>
Cedar Rapids, IA - Saturday, May 16, 2009 10:18 AM CDT
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Friday, May 15, 2009 1:29 AM CDT
just popped by to say hi and send Jesse hugs and kisses.
jenny <gemini150671@aol.com>
torquay, england - Monday, May 11, 2009 11:30 AM CDT
Hi Patty,
I wanted to drop by to say hi and to see how Jesse's digestive issues were doing. I am so glad to read that you are seeing some results from the enzymes, and hope that you continue to see more results as time goes on.
And Jesse, I want to wish you a belated happy birthday!! I hope you got each and every item on your wish list. Joanne, Mom to Sasha
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Sunday, May 10, 2009 6:14 PM CDT
HAPPY 14TH BIRTHDAY JESSE! Wonderful you are and wonderfully you are doing! KEEP THIS UP!
Hugs Elizabeth, Peter, Daniel, Sam and Anna
Elizabeth Schuepbach
Bern , Switzerland - Tuesday, May 5, 2009 3:35 PM CDT
Happy Birthday sweet friend! I hope that you had a very special day, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Monday, May 4, 2009 1:40 PM CDT
Happy Birthday Mr. Jesse!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Monday, May 4, 2009 0:45 AM CDT
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!!!
HAPPY BIRTHDAY, DEAR JESSE,
HAPPY BIRTHDAY TO YOU!!!!!
And MANY, MANY, MANY more!!!!!!!
Thanks, Patti, for your sweet note on Luke's page. Jesse's bday was good timing and a good reminder that the doctor's are NOT the ones in control! We'll leave that to God, thank you! :)
I hope you have many, many more wonderful years with Jesse! I'm so glad things are going well for him and hope he enjoys his birthday -- WHEN EVER you guys get to celebrate it! Enjoy every minute!
We think of you and all the others like Jesse & Luke often! Hugs to your family and a special bear hug to the birthday boy!
Mieke Embry (mom to Luke, MPS-IIIA) www.caringbridge.org/visit/lukeembry <embry10198@windstream.net>
Moody, AL USA - Saturday, May 2, 2009 8:57 PM CDT
Happy Birthday to both Patty and Jesse!
Hope all your wishes come true!
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA usa - Saturday, May 2, 2009 12:42 AM CDT
HOPE YOU HAD A GREAT DAY PATTY!
Hugs,
Kim & Scotty
MPS II <cottons@earthlink.net>Modesto, CA - Thursday, April 30, 2009 2:16 PM CDT
Hi Patti,
Sorry to hear that Jesse is having bowel/digestive problems. I sure hope you find out what's going on. Have you tried Miralax? It works really well for Hannah. It's hard to believe he'll be 14! Hope he has a wonderful birthday. Take good care. Anita
Anita Taulton <ataulton@comcast.net>
Jefferson, MD - Thursday, April 23, 2009 6:06 PM CDT
Hello Patty, I miss our weekly calls. I am sorry to hear that Jesse is having digestive issues. I hope he gets back on course real soon.I love the fact that you put some B-day ideas on here, I never know what to get.Would you like us to call you and tell you what we would like to give off the list so you don't get doubles ??( except of course money and gift cards, doubles would be good there )Or do you want to be suprised too??Let me know. Hope the stomach scans go well,I'll pray you get the answers to make his belly stop hurting.Take Care, I'll try and call you sometime this weekend.
Sheryl & Family
- Thursday, April 23, 2009 4:45 PM CDT
hello
stevenkollmansbergerr
fresno, ca usa - Wednesday, April 22, 2009 10:08 PM CDT
Kim & Scotty
MPS II <cottons@earthlink.net>Modesto, CA - Saturday, April 11, 2009 3:56 PM CDT
A friend of Jennifer and her wonderful grandmother.
Kathy Dellagiacoma <kathydm953@aol.com>
Bellaire, TX USA - Wednesday, April 8, 2009 5:02 AM CDT
Hi Patty, your website is great to visit. Thank you for always being available to answer my questions. I really appreciate your help. I'm glad Jessie is sleeping well.
Ann Goodell - Max's mom <agoodell@ida.net>
Alta, WY USA - Tuesday, April 7, 2009 11:14 PM CDT
Hi Patty: Glad to hear that Jesse is doing ok at this time. Was very sorry to hear about Jennifer. Please give her parents my best and let them know that I will be praying for them. It is so sad that Jennifer was sick and died, but I believe it was a blessing that she went peacefully in her sleep. Take care, all of you.
Gina Gonsalves <gina_gonsalves@verizon.net>
Laurel, MD - Tuesday, April 7, 2009 5:56 PM CDT
Happy Easter to you also Patty. I am so glad to read how well our friend Jesse is doing. I am sure you will figure out the cause of what's going on and correct it in due time. You always do the research that it takes to keep your boy healthy!! Hugs to you all, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, April 7, 2009 3:35 PM CDT
Happy Easter Patty. May this Easter bring many blessings your home and family. I am so happy to hear Jesse is sleeping and as usual you are on top of his nutrition and suppliments. The website looks beautiful. You are doing such a fantastic job working and still providing all the care you do for Jesse and your family. I know it is not easy. On top of that you are always available for all of us MPS families when we need help too.Thank you Patty for always being there for all of us. We love you very much and appreciate your time and efforts and care and concern.
May Easter Blessings be abundant this year and always,
Love Rosemarie
Rosemarie and Chase 17 yrs old with hunters <rveliz@nac.net>
Newton, NJ USA - Tuesday, April 7, 2009 7:18 AM CDT
Happy Easter! I can't believe Jesse is going to be 14 already. Time sure does fly. :) Give him a hug from me.
Karen
St Pete, FL - Tuesday, April 7, 2009 6:56 AM CDT
I did not hear of Jennifers passing, it is very sad! I love the photos of Jennifer and Jesse. Sorry to read about the seizure. You are so very strong and a huge blessing to Jesse and the rest of us who seek your wisdom. Praying for you daily, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Sunday, March 22, 2009 5:06 PM CDT
I am so very very sorry to read Jennifer has passed.Praying for her family.
Sheryl & Family
Westville, NJ USA - Saturday, March 21, 2009 10:29 AM CDT
I like the pictures of Jesse and Jennifer. Jesse is the man! That boy can not only pick up women but he can travel. Love Valerie
Valerie Patterson <vjpatterson@knology.net>
Huntsville, AL Madison - Friday, March 20, 2009 11:40 PM CDT
Glad Jesse had a wonderful St. Patty's Day ! I like how he knew to turn the corner on that side walk, looked like he knows to stay out of the road.Julie would have kept on going straight.Talk to you soon.
Sheryl & Family
Westville, NJ USA - Friday, March 20, 2009 3:46 PM CDT
Kim & Scotty
MPS II <cottons@earthlink.net>Modesto, ca - Tuesday, March 17, 2009 9:01 PM CDT
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Tuesday, March 17, 2009 7:43 PM CDT
I'm just so behind in checking in on my friends but I'm glad to hear Jesse is doing so well. Love the video's.
Our website
Sjon (dad to Kariem)
the Netherlands - Saturday, March 14, 2009 4:40 AM CDT
Love you Patty and Jesse!
DK and Tyler
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA 17033 - Friday, March 13, 2009 2:32 PM CDT
That is funny to me that you signed our guest book today. I have been trying to find the time to call and talk to you about the organic acid test. I am going out of my mind with Kassi and after reading about Jesse, I figure we should give it a shot. My child does not sleep! That also means that I dont sleep, but I still have to be up early. Like you I refuse to give in to the typical answer of " its just sanfilippo". With Mike being gone for two more months, I have to do something. All the remedies the sleep clinic recommended dont work. We are going to Stanford Pulminary tomorrow and I am going to talk to them about it. Well I am glad that Jesse is doing better. I will keep reading your page as always, you are always so detailed and helpful. Thanks for that.
Love, Trish
Trisha OFfenbacker <trishaoffenbacker@yahoo.com>
Travis AFB, Ca - Tuesday, March 10, 2009 10:08 PM CDT
Wow...it is great to read that Jesse is doing so well.I love the video of Jesse eating.
You are such an awesome mom! I dont know how you figure all the vitamin supplements out etc ,but you know Jesse best. Are you planning to come to Izzy's walk ? I hope so. We also had snow last Monday ( about 3 inches,enough to close the schools ) but yesterday and today it was 80 degrees!
Take care and give Jesse a hug from me.
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Tuesday, March 10, 2009 9:03 PM CDT
Hi Patty,
I just love all your videos of Jesse, he looks so great! I am so happy that he is doing so well. Joanne~Mom to Sasha
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Sunday, March 8, 2009 7:49 PM CDT
God Bless You Jesse!!!!!!!!!!(((((HUGS)))) You are AWESOME kiddo!
Love ya'!
Stacey and Lucas MPS IIIB
http://www.caringbridge.org/visit/hopeforlucas
Stacey Montgomery <lewnstacey@yahoo.com >
Cedar Rapids, IA - Wednesday, March 4, 2009 8:28 PM CST
Hi everyone, just wanted to stop by and say hello and glad to hear everything is going so well for Jesse! We hope you have a wonderful week and hopefully the weather will warm up soon so you all can get outside, it's been freezing here to and being inside is so boring! Keeping you all in our prayers, lots of hugs, Trish & Rhys(MPS1), www.caringbridge.org/visit/rhysboyd
Trish Boyd <boyd.trish@gmail.com>
Kendal, ontario Canada - Tuesday, March 3, 2009 8:04 PM CST
It is so great to read all of the healing that you make possible for Jesse. You are so diligent in your craft. I am so glad that the detox plan is working so well. Will has the flu and both ears are infected. I have resorted to a Z-pack for this situation. Praying all continues to go so well, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, March 3, 2009 1:05 PM CST
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Saturday, February 28, 2009 8:44 PM CST
Hi Patty, Years ago, before Sasha's diagnosis, we too do an Organic Acids Test. It was very helpful and lead us to a tailored treatment for her with supplements and diet. It's great you were able to do the test for Jesse and that you are getting some good results!!
Joanne <joannehff@yahoo.com>
Warren, NH 03279 - Sunday, February 22, 2009 11:30 AM CST
You are incredible, the way that you cure all of Jesse's ailments. I commend you for your strong devotion to a natural choice when available. It sounds like things are going great. Keep us updated, Misty
Misty Luthcke <mluthcke@netzero.com>
- Friday, February 20, 2009 11:11 PM CST
Hi Patty,
I am glad to read that Jessie is doing well. We miss you all! We'll talk soon on the phone.
Be Blessed,
Yavette
Yavette Houston (Jon-Jon's mom) <yavette@comcast.net>
Bristow, Va USA - Tuesday, February 17, 2009 4:05 PM CST
Happy belated Valentines to you all too!
I pray the detox is working and Jesse gets back to himself soon! I didn't realise you were so close to Washington -I lose track!! Hugs Laura and Will xxxxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Monday, February 16, 2009 7:52 AM CST
Happy Valentine’s Day!
You Know WE LOVE YOU!
Hugs & Kisses from Hershey ~
Donna Kay and Tyler
http://www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, pa us - Saturday, February 14, 2009 2:01 PM CST
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Saturday, February 14, 2009 2:37 AM CST
Kim & Scotty
MPS II <cottons@earthlink.net>Modesto, ca - Friday, February 13, 2009 10:02 PM CST
Patty and Jessie-
Thank you for all the information. You are such a wealth of knowledge. You should write a book on the nutritional needs of children with MPS. We hope you both have a wonderful Valentine's Day!
Hugs to Jessie from Lauren
Carrie Reed <carrie@laurensinstitute.org>
Queen Creek, Az USA - Monday, February 9, 2009 5:02 PM CST
Hi Patty,
Just wanted to stop in and say hi. Sorry to hear about the seizures. I hope Jesse is doing well.
Brooke & Elijah Story www.caringbridge.org/visit/myelijah
Post Falls, ID USA - Wednesday, February 4, 2009 11:50 PM CST
It was great chatting with you today Patty! Glad that Jesse is doing so well... give him big hugs for us.
Love,
Kim & Scotty (MPS II) www.caringbridge.org/ca/friends <cottons@earthlink.net>
Modesto, ca - Tuesday, February 3, 2009 11:56 PM CST
Hi Patty and Jesse,
We would love to help if we could in re: luncheon...I would love to get together with other families, as I feel very lonely here in Hershey all by myself!
I am also so encouraged by your videos of Jesse doing fun things...this past week we insisted that Tyler could ride a bike and with pedal modifications he did!
Jesse you are our hero!
Love,
Donna Kay and Tyler
www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, pa us - Thursday, January 29, 2009 12:04 AM CST
Hi Patty, so gald to read Jesse is happy and doing much better now.I am also gald he has his buddy Nanso back.Life is to short to spead it with people who just don't listen.I too love your site you have many talents!!I would certainly be apart of your summer MPS gathering if it is able to be arranged.Just let me know.Believe me I know how hard it is to work a full time job and try to take care of everyone and everything else in a household,especially special needs of MPS. Don't over work yourself about it. We could wait until next year. Talk to you late about it ,Sheryl
Sheryl & Family
- Wednesday, January 28, 2009 2:21 PM CST
Hi Dr.Patty, I cannot believe all that has been going on. I know that you always find out the root cause of things instead of excepting that it is MPS realted. You are a great mom and an excellent advocate for your sweet boy, Jesse. So glad to read about Jack's job, praying that all continues to go well and Hurray for Mr.Nunno(sp?) Love from, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Friday, January 23, 2009 8:58 PM CST
So sorry to hear about those seizures, but thankful that you were able to work out the cause and deal with it. I'm glad to hear the good news too, especially about Jack's job! That's great and I'm sure it'll be the start of great things.
Thanks for the update and big hugs from us all in Switzerland
Elizabeth, Peter, Daniel, Sam and Anna
http://www.caringbridge.org/visit/danielschuepbach
Elizabeth Schuepbach
Bern, Switzerland - Friday, January 23, 2009 2:42 PM CST
Dear Patty and Jesse.
I am so glad to hear Jesses is doing so well. Thanks to you Patty as you are such a wonderful mom.My God Bless you with a Happy Healthy New Year.YOur new webpage is beautiful. I absolutely love it. Good Job Mom.
I got all your calls. I will be in the hospital. I will call you from there.
Love Rosemarie and Chase
Rosemarie and Chase 17 yrs old with hunters <rveliz@nac.net>
Newton, NJ USA - Friday, January 23, 2009 8:04 AM CST
I am glad Jack has a new job and things are going better. Sorry to hear about you losing acupunture. Kassi has been seeing the same physical therapist for almost a year now. he specializes in visceral manipulation and cranial sacral therapy. They produce the same results as acupunture. This has done wonders for Kassi. We just recently had her enzyme levels checked and we will be doing an ultrasound of her liver and spleen on Monday. We want to know how much Haan ( PT ) is actually helping her. I have also gotten some work done from him and I feel wonderful. I will let you know what the results are and maybe you can think about it as an option for Jessee. The good thing is that most insurances pay for PT, so you just have to find one that specialized in it. I can help you with that. There are also 2-5 day courses you can take to learn to do it yourself. I am thinking about taking them within this next year. Well good luck with planning your meeting. If I lived closer I would go.
Hugs,
Trish and Kassi Offenbacker
Trisha OFfenbacker <trishaoffenbacker@yahoo.com>
Travis AFB, ca - Thursday, January 22, 2009 9:41 PM CST
Hi Patty:
Your website is wonderful. Full of great information. You are an inspiration to me. My husband and I would like to come and visit you and Jesse one Saturday. I live in Laurel so you are not too far away.
Gina Gonsalves <gina_gonsalves@verizon.net>
Laurel, MD USA - Monday, January 19, 2009 7:49 PM CST
I have taken some time tonight to look through your site. It is wonderful. Jesse is awesome!!
-Shannon (mom to Waverly & Oliver, both MPS IIIA)
Shannon McNeil
- Monday, January 12, 2009 9:54 PM CST
Thought I would drop in and say "hi". Hugs for Jesse.. love you guys!!!
Stacey and Lucas
http://www.caringbridge.org/visit/hopeforlucas <lewnstacey@yahoo.com>
- Monday, January 12, 2009 4:28 PM CST
Hi Patty,
I changed emails and jobs and computers....now running my own Real Estate Company here in Colorado. Could you send me an email with your contact info again, also the professors in Poland...I had a question for him regarding another Phyto Estrogen that we found called 8-PN.
Thanks,
Gerry Taylor <gerry@40westrealestate.com>
Lafayette, CO usa - Thursday, January 8, 2009 5:19 PM CST
MyHotComments
kathy and angel katilynn preston <katilynnsmom@yahoo.com>
tomahawk, KY USA - Tuesday, January 6, 2009 4:40 PM CST
Happy New Year!! Praying you all have a wonderful new year. With all the trials of last year it probably feels good to begin a new year. WIth love, Misty, Will and Nicole
www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Monday, January 5, 2009 4:46 PM CST
Hi Jesse,
I loved your videos. You looked like you were having so much fun running in the halls and singing with your class. Happy New Year!!
www.caringbridge.org/visit/quiltsofhope
Jaime <aquiltofhope@aol.com>
- Thursday, January 1, 2009 7:05 AM CST
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Wednesday, December 31, 2008 12:35 AM CST
Merry Christmas! We hope that you all had a wonderful holiday. We all said a prayer for our sweet little man Jesse. With Love, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Saturday, December 27, 2008 6:39 PM CST
Happy Christmas to you all!!!
Love the video of Jesse running along the corridor, remember Lewis when he used to run around just like him....similar in so many ways.
Wishing you all a happy & healthy 2009, hope the work picks up for Jack.
Thinking of you all,
The Broadley Family
Norma Broadley <normabroadley@hotmail.co,uk>
Falkirk, Scotland - Friday, December 26, 2008 1:22 PM CST
We wish you a Merry Christmas!
We wish you a Merry Christmas!
We wish you a Merry Christmas…
And a Happy New Year!
Cheers!
Hugs and Kisses from Hershey,
The Langan Family, Tyler ~ MPS III A
http://www.caringbridge.org/visit/tylerlangan
Love the videos, thank you for always sharing. Even though I don't sign as much as I visit, I must tell you that you are such a support and an inspiration to me. Jesse is our hero...meeting him and you that first time truly changed our lives forever. Patty I think of you so often, please know you are never far from my thoughts and always in my prayers.
Peace and love always. God Bless
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA USA - Thursday, December 25, 2008 10:18 PM CST
love Laura and Will xLaura Brodie <labro4will@yahoo.co.uk>
Birmingham, england - Tuesday, December 23, 2008 1:41 PM CST
Stopping by to wish you all a wonderful Holiday season.
Merry Christmas and Happy New Year!
Anne and Sebastien
www.caringbridge.org/visit/sebastiencairns
Anne Cairns <buzz.cairns@sympatico.ca>
Markham, ont Canada - Tuesday, December 23, 2008 11:37 AM CST
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Tuesday, December 23, 2008 9:22 AM CST
Hi Patty & Jesse!! Wonderful videos of Jesse!! He is doing really well! I loved watching him run, how fantastic! He definitely wanted to get his hands on that drum too! Thanks for sharing - it made me smile today.
Lots of love, Louise & Georgia xxx
Louise Lewis
Chepstow, UK - Sunday, December 14, 2008 10:45 AM CST
Way to go Jesse, you did a great job at the concert! That is one talented dude that can play two instruments at the same time! LOL
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Saturday, December 13, 2008 7:45 AM CST
Hi Patty & Jess, Glad to read Jessies' health has been so good,he seems so happy!!!You were great in your show at school Jess!Look out Dad you may have some competiion if his class goes on the road (smile).I'm Glad Jack was able to find a job, at least get you through the winter months,maybe by then his other job will come back.Hope you can get some R$R for Christmas Patty.I know you need it!! Praying for you all,Sheryl
Sheryl & Family
Westville, NJ USA - Friday, December 12, 2008 8:50 PM CST
HiPatty-Thanks for sharing some truly precious moments in Jesse's day on the youtube video. You have been a terrific cheerleader these past frustrating months. This isn't going to come as a big surprise, but I read your guestbook entries over and over because they say so much and sound so familiar...as in someone who truly understands. Thank you for taking the time to type from your heart. You do know how many of us aspire to have our children be 'Jesse's' as they grow up, don't you? He is doing so fantastic! I'm sure if we could lift the Sanfilippo vail for one moment, he'd smile with a twinkle in his eye and say he's fighting like crazy! He is a warrior in this battle, and Cooper is marching right along with him!
Hope & Prayers for a peaceful holiday season-
Shannon...Cooper's MOM
shannon rieg <shannon.rieg@hotmail.com>
- Friday, December 12, 2008 7:37 PM CST
Hi Patty and Jesse, Happy Holidays! I am so sorry that Jack's work has slowed so drastically. Great that he has the band to fall back on. I know it is a huge struggle for you and I pray for a better economic future for you all.Glad to know that your baby is doing so well. He is absolutely incredible. The school struggles are ashame, they should try their best to help...but they don't. He needs a social outlet, I would homeschool Will if I didn't think that he greatly benefitted from being with other children. So happy that Thanksgiving was good. Love the photo! Misty, www.mircle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Monday, December 8, 2008 10:46 AM CST
Good Morning!
I hope you all have a wonderful Thanksgiving!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Thursday, November 27, 2008 7:09 AM CST
Kim & Scotty (MPS II) www.caringbridge.org/ca/friends <cottons@earthlink.net>
Modesto, ca - Wednesday, November 26, 2008 4:04 PM CST
Hi Patty and Jesse, I love all of the new photos. It looks like you had a great time. I didn't even think about Disney! You have te energy of a kid! Glad things are going well. I miss the photo of Jesse and Nicole! We miss you, Misty www.miracle4will.com
Misty Luthcke <mluthcke@netzero.com>
- Wednesday, November 19, 2008 10:05 AM CST
Hi Jesse,
I am happy to hear you had a good trip to Califonia. I hope you are having a nice weekend.
www.caringbridge.org/visit/quiltsofhope
www.freewebs.com/quilts-of-hope
Jaime <aquiltofhope@aol.com>
- Saturday, November 15, 2008 10:03 PM CST
Kim & Scotty MPS II
<cottons@earthlink.net>Modesto, CA - Friday, October 31, 2008 6:52 PM CDT
Hi Patty and Jesse,
I love your recent update and photos of your trip. What a beautiful slide show and journal entry. I wanted to write to thank you, too, for signing our guestbook at Sasha's new CaringBridge site. It meant a lot. Thank you! Joanne (Sasha's Mom)
Joanne Huff <joannehff@yahoo.com>
Warren, NH USA - Tuesday, October 28, 2008 3:23 PM CDT
Glad you and Jesse had a wonderful time in CA. Great pictures!
Anita Taulton <ataulton@comcast.net>
- Sunday, October 26, 2008 7:56 AM CDT
Hi Patty and Jesse,
Looks like the both of you had a wonderful time! Great! Love the picture of Jesse and Tiger!!!
Our website
Sjon (dad to Kariem)
The Netherlands - Sunday, October 26, 2008 0:12 AM CDT
Hi Patty and Jesse -I think you all had a great time at the RUN ! I hear can't wait to hear your update too! hugs and love Laura and Will xxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Saturday, October 25, 2008 10:51 AM CDT
Only 8 days left, can't wait to see you both again!!!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>Ione, CA USA - Wednesday, October 8, 2008 12:47 AM CDT
Hi Patti and Jesse
I can't wait to see you in a couple of weeks! I guess I had forgotten that you have never been to CA! I know you'll enjoy it.
See you soon.
Love,
Kim & Scotty MPS II
<cottons@earthlink.net>Modesto, CA - Saturday, October 4, 2008 12:09 AM CDT
Hi Patti, I am so glad that Jesse is still doing so well! Praise God! The first thing I saw when I came to your Caringbridge page was John 11:4. That is our verse for Alex too. We know that God has a plan and we have already seen Him working in our little boy's life!
Jennifer and Alex
- Wednesday, October 1, 2008 8:05 AM CDT
Patty, You never cease to amaze! Who could imagine a simple little melon could be causing problems with Jesse. You are so great about looking for answers to all of his issues. I am so happy that you and Jesse are able to go to the LA walk/run, I hear it's a major event. Have fun! We miss you all, Misty
Misty Luthcke <mluthcke@netzero.com>
- Monday, September 29, 2008 9:19 AM CDT
Thank you for continuing to be a Sanfilippo Warrior. We moms are so greatful for the knowlegde you share. Glad to hear Jesse is feeling good and full of life!
Hope & Prayers-
Shannon...Cooper's MOM
shannon rieg
- Sunday, September 21, 2008 9:58 PM CDT
Hey Patty...I know wow I am signing the guestbook, lol, I am really bad about that. Anyway...I heard that Jesse was feeling better! Glad to hear that. Praying for him
alyssa...godmother to Ciara, Hunter and ^Tommy^ <sabiemc@aol.com>
- Thursday, August 21, 2008 6:25 PM CDT
I am so sorry about Jesse having difficulties. I too, have miagrains, not fun! Bless his heart. I know that Dr.Patty will have this situation resolved soon. Jesse is so fortunate to have you. Praying for healing for Jack as well.
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, August 19, 2008 9:46 PM CDT
So glad to hear Jesse is doing better!!I think one of the worst things with Sanfilippo is seeing your child go through extreme changes and nobody has any answers for you. Your basically left to guess and hope you guess right.I'm so happy for him that it has passed and he is back to his " happy go lucky " self.
Sheryl & Family <212224@msn.com>
Westville, NJ USA - Tuesday, August 19, 2008 11:18 AM CDT
Dear Patty and Jack,
Thanks for keeping us all informed, our hearts and our prayers go out to you. Connie and I are so sorry for the loss of your mother, it's always untimley.
Jesse looks great with his shades on, sorry he is wearing they because of the migrains.
God Loves each of you and so do we!
Connie and Boyd Mitchell <boyd.mitchell@cbn.org>
Seaford, DE USA - Monday, August 18, 2008 8:01 PM CDT
I am so sorry about Jack's mother. The pictures are all so cute of Jesse. He looks good with his shades on!! I hope the new school year will be a good one for Jesse. Keeping your family in my prayers. Love and prayers from SC. Kathy
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Monday, August 18, 2008 6:27 PM CDT
Hi Patty
Thank you for such a detailed update on Jesse. Goodness it is so so hard to diagnosis what is bothering our dear children isn't it. Poor Jesse having that terrible migraine. Hope that you find the actual trigger so that it doesn't bother him again.
Love Ria & Jazzy
caringbridge.org/hi/jasminmay <riaheap@aol.com>
England - Monday, August 18, 2008 2:52 AM CDT
Hi Patty!
Reading your Journal made me really sad. So sorry what your little man went through. I know how awful those migraine head aches are. I am glad he is feeling better now.
It was really nice meeting your MOM and have some time with you and Jesse at sheryl's house.
Thanks to the Jack's recipe, i got a lot of great comments on my salads.
Your family is always in my prayers. May GOD give your family strength on losing Jack's MOM.
Lot of love and (((HUGS))) for Jesse.
Tayyaba Beg <tayyaba@helpourgirls.com>
NJ - Monday, August 18, 2008 1:28 AM CDT
Hi Patty:
I'm glad that Jesse is doing well. My prayers to you and Jack; losing a parent is never easy. Enjoy the remainder of the summer and hugs to Jesse.
Shereese Tucker <shereeset@aol.com>
Baltimore, MD - Sunday, August 17, 2008 7:20 PM CDT
Well it's good to hear that Jesse is doing better, I have been thinking about him since we talked last. You know our prayers are with you over the next few days, more then ever. HUGS!
Alicia, John, Ciara, Hunter & ^^Angel^^ Tommy BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>
- Sunday, August 17, 2008 4:14 PM CDT
Sending prayers for you, Jack and Jesse during this time.
leslie j <ijf@comporium.net>
rock hill, sc - Sunday, August 17, 2008 1:33 PM CDT
Hi Jesse & Patty
I am so sorry to hear about Jack's mom passing away. Many prayers for all of you.
Hugs and Much Love,
Kim & Scotty MPS II
<cottons@earthlink.net>Modesto, CA - Saturday, August 16, 2008 10:48 AM CDT
Dear Patty and Jesse.
I know I have not talked to you in a while. I have no privacy and no life here with nurses. My life at home is tough now and exhausting. I love the picture of Jesse here! I am sure you are having a good time at the picnic this weekend. Please know I have not forgotten you and will call you soon. Thank you for the email card and all the nice messages.SOrry to hear of your loss with Mom Mom. Keep praying as all things are getting tougher all over.
Love Rosemarie and Chase
Rosemarie Veliz <rveliz@nac.net>
Newton, NJ USA - Sunday, August 10, 2008 5:16 PM CDT
Patty, I am so sorry i ahve been a little on the MIL side, please let Jack know I am so sorry about his Mother do tell him she is with so many MPS and ML Angels and definetly in a good place. Jesse looks like he is doing so wonderfully, you are such an amazing Mom!
I love you Patty!!
Many Hugs and prayers,
Erica www.caringbridge.org/wi/ericathiel
Erica Thiel <ethiel@att.net>
Waupun, WI USA - Sunday, August 10, 2008 0:42 AM CDT
Love the pic of Jesse, makes your heart melt. So pleased you sorted out care for Jesse too. xxxx
jenny radmore <gemini150671@aol.com>
torquay, england - Saturday, August 9, 2008 3:23 AM CDT
Tell Jack and family that they are in our prayers. This is a difficult time even when you think you are prepared.
Have a great weekend. Wish we could be there :-( . Hopefully we will be able to visit soon now that Lucas is "cleaning out" and getting back to his "normal" self.
Thanks Patty for always being there ..... Hugs for Jesse !!
I love your homepage. Jesse always looks so healthy and strong. I just love that he is doing so well!!http://www.caringbridge.org/visit/hopeforlucas
Stacey and Lucas <lewnstacey@yahoo.com>
- Friday, August 8, 2008 11:00 PM CDT
I am so sorry about Jack's mother. You all are in our prayers. Misty, Louis, Will and Nicole
Misty Luthcke <mluthcke@netzero.com>
- Wednesday, August 6, 2008 11:27 AM CDT
Hello! Just dropped by to check in and see how things were going for you guys. It's been a while since I "officially signed in" to say hello, so I am doing so now. Sounds like it's been a good summer! Glad to hear it. Luke is back to school this Thursday, Aug. 7! I spoke with his teacher today and they're ready and anxiously awaiting the return of the kids!
Ya'll take care! :)
Mieke Embry (mom to Luke, MPSIII-A)
www.caringbridge.org/al/lukeembry
Mieke Embry <embry10198@windstream.net>
Moody, AL USA - Monday, August 4, 2008 11:55 PM CDT
Wow, the picture just broke my heart. I remember watching them walk around the gym and thought of how special that was. I feel blessed to have met you...what an inspiration you and Jessee are to us who have just started this journey. Stay strong.
Much Love,
Michele Burbank
Will's aunt
Michele Burbank <mmbbank@aol.com>
Birmingham, AL usa - Monday, August 4, 2008 1:07 PM CDT
That photo is so sweet. It melts my heart also. One small, insignificant moment in time, that means so much. Have a great time in NJ, tell everybody hello from Alabama! I will be praying for Jack and his family. I understand the pain you feel in this. We are so pleased to have you in our lives, Misty, Will and girlfriend Nicole
Misty Luthcke <mluthcke@netzero.com>
- Sunday, August 3, 2008 0:04 AM CDT
Can't wait for October to come!!! We will have so much fun!!!
Alicia, John, Ciara, Hunter & ^^Angel^^ Tommy BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>
- Saturday, August 2, 2008 7:14 PM CDT
Hi Jesse & Patty
Love your new photos..looks like you guys had a great
trip!
Give Jesse big hugs and kisses for us.
Love,
Kim & Scotty MPS II
<cottons@earthlink.net>Modesto, CA - Saturday, August 2, 2008 2:51 PM CDT
Hi Patty and Jesse,
Just wanted to stop in and say Hi.
www.caringbridge.org/visit/myelijah
Brooke and Elijah Story
Post Falls, ID - Wednesday, July 30, 2008 2:06 PM CDT
Hi Jesse and Patty ,
Just a quick note to say hi I had better start to go get ready for physio.
Have a great day
Ashlee www.caringbridge.org/canada/ashlee
Ashlee <mwccamper@yahoo.ca>
Ontario Canada - Tuesday, July 29, 2008 8:57 AM CDT
Wow the ranch looks great, love the pics of Jesse smiling. Looks like you both had a great time. Jenny xx
Jenny Radmore <gemini150671@aol.com>
torquay, england - Friday, July 25, 2008 2:55 AM CDT
Hello friends!! I love stopping by your website Jesse, you are an absolute inspiration for us!! Think of you all the time.
Big hugs,
Stacey and Lucas
http://www.caringbridge.org/visit/hopeforlucas <lewnstacey@yahoo.com>
- Wednesday, July 16, 2008 7:31 PM CDT
Hi Patty and Jesse
Stopped by to say hello and see how you are doing! The ranch looks beautiful. Love the youtube video!
Kathie <kathie12@sympatico.ca>
Canada - Tuesday, July 15, 2008 8:30 PM CDT
Hi Patty and Jesse, It looks like you had a fabulous time at the ranch. Jesse looks so happy and healthy, congratulations! So glad you have been able to see some other Sanfilippo families the Summer. We miss you and are praying for you daily, Misty, Will, Nicole and Louis
www.caringbridge.org/visit/willluthcke
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, July 15, 2008 11:38 AM CDT
Jesse looked like he was having a great time at the ranch! I am glad he is doing well.
Stay "cool" this summer and give Jesse a big hug from his S.C. friend. Love and prayers across the miles. Kathy
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Tuesday, July 15, 2008 9:50 AM CDT
It's nice to see Jesse so happy and running around.Seems like you all had a great time.Nothing like some fresh air and a open field.Glad the day went well for all of you!!!!
Sheryl & Family
Westville, NJ USA - Tuesday, July 15, 2008 6:58 AM CDT
Patty, it has been awhile since I said "hello" -- You do a fantastic job with Jesse and your journals ... I truly enjoyed the slide show and get so excited when I see a picture of Mackenzie .. she is such a "sweetie" and like your Mom and Jesse, Mackenzie is growing so that I can't just pick her up anymore, but how she loves to cuddle! I am sorry things are tough but YOU are too -- and things will get better.
Becky Clarke (Mackenzie's Grandmom) <vabeckyclarke@netscape.com>
Newport News, VA USA - Tuesday, July 8, 2008 8:31 PM CDT
HI Patty and Jesse,
So nice to haer from you :)
Yeah it bites that I had to have a few seizures at camp. i'm thankful the staff took such great care of me.
I'm headed off to another camp in 31 days Aug 9th excited about it.
Have a good week
Love Ashlee www.caringbridge.org/canada/ashlee
Ashlee <mwccamper@yahoo.ca>
Ontario Canada - Tuesday, July 8, 2008 8:27 PM CDT
Hi Patty, Hoping that Jesse gets some more activity soon. You have such a load to bear. I am sure it is nice knowing that Jesse is being "schooled" while you are working. I am sorry to hear of your economic stresses and I am praying it will end soon. Misty and Will
Misty Luthcke <mluthcke@netzero.com>
- Sunday, July 6, 2008 9:20 PM CDT
Hi Patty!
The You Tube video of Jesse is so cute. I am keeping you in my prayers. Take care and give Jesse a big hug from me.
Love , Kathy
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Sunday, July 6, 2008 8:30 PM CDT
Still praying for you dear friend.
cdelhart <cdelhart@windstream.net>
thomaston, ga usa - Saturday, July 5, 2008 9:58 AM CDT
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <msp3mom@hotmail.com>- Friday, July 4, 2008 8:03 PM CDT
Hi Patty and Jesse,
Hope all is well with you, looks like you had a great time at the walk/run.
Hope you guys have a great rest of the summer and are staying cool.
I'm headed to March Of dimes camp on Monday for a week , I can't wait.
Ashlee
www.caringbridge.org/canada/ashlee
Ashlee <mwccamper@yahoo.ca>
Ontario Canada - Saturday, June 28, 2008 7:23 PM CDT
Hi jesse, this is your nurse. I just want to say hello and let you know that you are still loved. I know you are enjoying your holiday. Hope to see you soon. Remain blessed my boy, Love you.
Nonso
Nonso Okudo <norsyworld@hotmail.com>
Baltimore, md USA - Wednesday, June 25, 2008 6:26 PM CDT
Just stopping in to check on Jesse. Glad to hear all is going well.I enjoyed the slide show from your trip to Chapel Hill and Izzy's walk. Hope Jesse is enjoying the summer weather and keeping cool.
Sharon Cochenour (mom to Andrew) <scochenour@hotmail.com>
Clarksburg, OH USA - Saturday, June 14, 2008 11:05 AM CDT
Patty, Thank you for sharing the news of Laurens death with us. She was a beautiful girl with a lovely spirit. A dedicated family who made it so obvious the love they have for her. Praying that they are keeping there great faith alive, Misty
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, June 10, 2008 10:47 PM CDT
I love the slide show. The pics are priceless. It is realllly HOT down here in SC right now. We are under a Bermuda High. Temps hitting 100 the last few days. Hope it will be cooler by Friday for the golf tournament. Take care.
Catherine Abernathy <cabernat@truvista.net>
Chester, SC - Monday, June 9, 2008 1:06 PM CDT
Happy 13th Birthday Jesse!
www.caringbridge.org/visit/quiltsofhope
Jaime <aquiltofhope@aol.com>
- Sunday, June 8, 2008 3:59 PM CDT
Hi Jesse and Patty- Sorry we missed your birthday! Sounds like you had a great one. My goodness, what a big boy you are now! 13 already and looks like those legs have grown a couple of feet to prove it.
Have a wonderful year full of sunshine and happiness Jesse!
Big hugs,
Elizabeth and Daniel
Elizabeth Schüpbach
Bern, Switzerland - Wednesday, June 4, 2008 3:44 PM CDT
Hello,
I just wanted to pop in and say hello and to let you know that I was thinking about you all!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Tuesday, June 3, 2008 10:15 AM CDT
I love the new photos. We had so much fun meeting you two absoultely incredible people. Nicole loves Jesse, as do all of us. We feel honored to have met you and the others Sanfilippo families at the event. Thank you for allowing us to be part of your stay in SC.I can't wait to see you all soon. Misty www.caringbridge.org/visit/willluthcke
Misty Luthcke <mluthcke@netzero.com>
- Saturday, May 31, 2008 5:55 AM CDT
Looks like you all had a great time! Your struggle trying to prepare food in the community kitchen and holding on to Jesse at the same time is so familiar... We sneak food into our room though!!! LOL
Great slide shows!
Have a nice day!
Sjon (dad to Kariem, mpsII)
the Netherlands - Saturday, May 31, 2008 1:35 AM CDT
Hi Patty!
It was really nice seeing you and Jesse in SC. Thank you for sharing the pictures. They are really nice and show Jesse had a great time. You are absolutely right about being with other MPS families do make you feel normal and they are the only people who do understand what you going through. I wish i had more time to spend with you guys. Looking forward to see you again this summer.
lot of love and many hugs your way.
Tayyaba Beg <Tayyaba@helpourgirls.com>
NJ - Saturday, May 31, 2008 0:52 AM CDT
Oh Patty it looks like you all had a great time. I miss you and Jessy! I can not attend the conference this year (input crying face here) but maybe just maybe you can come to the run and stay with Sharon this year?? Would love to see ya!
Love and Hugs,
Tami Slawson <TLSlawson@aol.com>
La Verne, CA - Friday, May 30, 2008 8:29 PM CDT
Hi Patty
It was so nice to finally meet both you and Jesse in person. Thank you for making the long trip down to SC to be with us for Izzy's Legacy 5K. The feeling of having so many people all together in my hometown for a special occasion but not having enough time to spend with each of them reminded me of our wedding day. I wish we had been able to spend more time together. I pray the ride home was uneventful. Jesse was much bigger than I had imagined him. It is great to see him doing so well at age 13.
Leslie Jurado <ijf@comporium.net>
Rock Hill, SC - Thursday, May 29, 2008 9:16 PM CDT
Way to go Jesse, a bronze and a silver huh. Love the pics Patty. xxxx Jenny and Ben
jenny <gemini150671@aol.com>
torquay, england - Thursday, May 29, 2008 5:41 PM CDT
Patty and Jesse we are so happy to finally get to meet you both. You are incredible and your stength and determination are awe inspiring. Please keep in touch with us and we hope to see you again soon. Nicole sends her love!!!Misty Mother to Will MPS111A
Misty Luthcke <Mluthcke@netzero.com>
- Tuesday, May 27, 2008 6:28 PM CDT
Patty and Jesse, thank you so much for making the trip to SC to attend the race. I have wanted to meet you both for a long time. Jesse, you are quite the handsome young man and sweet and loving as well. I hope to see you again soon.
Catherine Abernathy <cabernat@truvista.net>
Chester, SC - Monday, May 26, 2008 7:57 PM CDT
Hey Jesse! I'm so glad I finally got to meet you in person. You are such a handsome and sweet boy. I hope you have a great week this week, and I hope to see you again soon.
Love,
Kelly
Kelly Hollingsworth <kellyholly03@yahoo.com>
Rock Hill, SC USA - Monday, May 26, 2008 9:00 AM CDT
Patty and Jessie,
It was so nice to meet you both at Izzy's walk/run. Jessie, you are even more handsome in person!! I hope you had fun at Carowinds and have a safe trip home to Maryland. You both will continue to be in my prayers. Love , Kathy
Kathy Blackwelder <jkmm@comporium.net>
Rock Hill, SC - Sunday, May 25, 2008 6:56 PM CDT
It was so nice to finally meet you Jesse and Patty! Im so happy you could make the trip to SC. I hope you had a great time. It was wonderful to have so many of the families together and get to see all these special children. I hope you have a safe trip home.
Liz Hindson <lizcon@yahoo.com>
SC - Sunday, May 25, 2008 6:20 PM CDT
Happy Memorial Day to you! :) Colton and family
caringbridge..org/ca/coltonmeyer
ca - Sunday, May 25, 2008 5:31 PM CDT
Dear Patty, Jack, and Jesse! Happy May birthdays to you, Patty & Jesse! Jesse has grown into a fine young man. I loved the photos of the birthday parties and the video clip of Jesse & Patty opening gifts.
Diane Flatley
Baltimore, MD USA - Sunday, May 25, 2008 8:56 AM CDT
What a birthday bash you all had!! It looks like you all enjoyed a beautiful day and a fabulous party. Thanks for sharing the party pics and video...precious.
Happy Birthday you big Stud!
Love -
Shannon Rieg...Cooper's MOM
shannon rieg <shannon.rieg@hotmail.com>
- Saturday, May 24, 2008 11:26 AM CDT
I see you had a REALLY GREAT BIRTHDAY Jessie. You obviously have a Wonderful Mother standing right by your side and making every moment of every day the BEST she can make it for YOU! I believe God chooses wisely who he gives you Beautiful Children to. As I continue to read other kids journals, I continue to recognize more and more 'OFF THE CHART MOTHERS'.
Amy Kemp <amyjeankemp@yahoo.com>
Pulaski, VA USA - Thursday, May 15, 2008 8:29 PM CDT
Hi Patty,
I am really looking forward to meeting you and Jesse in person at Izzy's run. I'll be praying for safe travels. See you soon!
Kelly Hollingsworth <kellyholly03@yahoo.com>
Rock Hill, SC USA - Thursday, May 15, 2008 12:56 AM CDT
Hi Patty!
Stop by to say Happy MPS Awareness day.
Tayyaba Beg <tayyaba@helpourgirls.com>
NJ - Thursday, May 15, 2008 9:58 AM CDT
Thinking of you today!
Love,
Rebecca * Nathan
www.caringbridge.org/visit/nathanbivens
Rebecca
- Thursday, May 15, 2008 7:02 AM CDT
Paulina and Andrew
Paulina Jump <caljump@msn.com>
Sparta, KY USA - Thursday, May 15, 2008 6:07 AM CDT
WOW ! congratulations to Jesse - what a sprinter and thrower - medals and everything...what a great day it must have been.
It looks like it was a great birthday also...all those happy time are so precious. What strenght it brings us.
Jesse looks so good, congratulations to you, your quite a super mom.
Wish all your family lots of rest and happiness.
christiane (jonathan) <p.chayer@videotron.ca>
- Monday, May 12, 2008 9:46 PM CDT
Thanks so much for posting new pictures. It looks like you had a wonderful birthday party for Jessie. And, as always, I thank God for you in Jessie's life. I hope you had a wonderful Mother's Day, because you are a wonderful mother.
Stacy
- Monday, May 12, 2008 7:35 PM CDT
Jesse, Happy belated birthday :)
Patty , I love jesse's new swing if only I could find something like that for me .
Thinking of you guys
Love Ashlee www.caringbridge.org
Ashlee <mwccamper@yahoo.ca>
North Bay, Ontario Canada - Monday, May 12, 2008 5:20 PM CDT
hi jesse,its your best friend and second mom.i miss having you in my class.you will always be second son.happy birthday again
kathy <kaycoachbags@yahoo.com>
baltimore, md. - Monday, May 12, 2008 2:57 PM CDT
Happy 13th Birthday Jesse! What a big boy you are now! I loved the video of you and your Mum. It was as if I'd really met up with you at last! Hope to meet you really one day my man. You have a great family and congrats to your Mum too for her birthday! May the Lord bless you with an incredible year and lots of leaps forward!
Elizabeth and Daniel
xxxxx
http://www.caringbridge.org/visit/danielschuepbach
Elizabeth Schüpbach
Bern, Switzerland - Monday, May 12, 2008 12:57 AM CDT
Happy Birthday, Jesse! It looks like you had a great party! I am glad that the sun came out just for you!! The pictures and video are great!
Love,
Jen and Dan Corcoran
Jennifer Corcoran <jen_moylan@hotmail.com>
Baltimore, MD - Monday, May 12, 2008 10:52 AM CDT
Patty the birthday pics and video are fabulous. It looks like you had a great time. I love the new furniture!!!Can't wait to see you on the 24th, Misty
Misty Luthcke <Mluthcke@netzero.com>
- Monday, May 12, 2008 9:57 AM CDT
Happy birthday Jesse! It looks like you had a wonderful birthday party and you are getting so big. Hopefully I will get to see you again soon, I miss you guys!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Monday, May 12, 2008 9:43 AM CDT
Great Pictures.
Valerie Patterson <vjpatterson@knology.net>
- Monday, May 12, 2008 8:08 AM CDT
Jessie, Just wanted to say God Bless You. You are such a Beautiful Boy. Hope your Mom has a Very Happy Mothers Day.
Amy Kemp ~ MPS II Mom
www.caringbridge.org/visit/zainsemones.
Amy Kemp <amyjeankemp@yahoo.com>
Pulaski, VA USA - Sunday, May 11, 2008 1:08 AM CDT
My son Rishivane is MPS III A patient. I want to interact with other parents and willing to improve my sons life
Sivaradje <shivaradje@hotmail.com>
Pondicherry, India - Thursday, May 8, 2008 11:06 AM CDT
Hey, I didn't know you won a medal?! That's awesome! Well done, Jesse!
Our website
Sjon (dad to Kariem MPS II)
the Netherlands - Monday, May 5, 2008 11:56 PM CDT
We send our belayted Happy Birthday to Jesse. I am glad to hear that things are going well. I wish we could go to IJF run but that it a big trip for us and unfortunatly can not make it. I would love to meet more mps families. I hope that you have a wonderful trip!
trishaoffenbacker@yahoo.com <trishaoffenbacker@yahoo.com>
Travis AFB, Ca - Monday, May 5, 2008 11:26 PM CDT
for Jesse lots of love Laura and Will xxxxx
Laura Brodie <labro4will@yahoo.co.uk>
Birmingham, England - Monday, May 5, 2008 4:48 AM CDT
I am sorry I forgot to sing Happy Birthday to Jesse. I hope he had a great birthday. I was praying for the school situation today. I know God will put him in a school that will take care of him and bring out his fullest potential.
Valerie Patterson <vjpatterson@knology.net>
Huntsville, AL Madison - Sunday, May 4, 2008 2:20 PM CDT
Happy Birthday Jesse!! I can't wait to finally meet you and your mom in person.
Leslie Jurado <ijf@comporium.net>
Rock Hill, SC - Saturday, May 3, 2008 8:41 PM CDT
Glitter Graphics & Comments
I hope you had a wonderful Birthday and hope you have a great Party next weekend!! I love your new pictures looks like you really like your new aide/nurse!! Manny hugs From me and the boys!!
Take care and God Bless
Deon, Ricky and Kenny
www.caringbridge.or/visit/nelsonboys
Deon Nelson <thumpernel@sbcglobal.net>
Lawton, OK - Saturday, May 3, 2008 7:16 PM CDT
I LOVE the new photos, I cannot wait to meet Jesse. I already love him! Misty
Misty Luthcke <Mluthcke@netzero.com>
- Friday, May 2, 2008 9:03 PM CDT
HAPPY BIRTHDAY, JESSE!...and congratulations on your bronze and silver medal wins at Special Olympics. I have had a very good birthday, today. I hope you have too. I am looking forward to meeting you and your mom. See you on the 24th at the race.
Catherine Abernathy <cabernat@truvista.net>
Chester, SC - Friday, May 2, 2008 8:47 PM CDT
Happy Birthday Jesse!!!! A teenager, who knew. We are so happy for you and your family. Please keep doing so well and know that we are praying for you, Misty, Mother to Will MPSlllA
Misty Luthcke <Mluthcke@netzero.com>
- Friday, May 2, 2008 7:44 AM CDT
Hey, Patty & Jesse! WOW!! 13! It's wonderful to see how well Jesse is doing. It gives us all so much hope. Luke continues to do well, too. He'll turn 9 in June. He's been sleeping well and feeling good ... not to mention really happy! (And we love every little giggle and squeal we get!) You guys are often in our thoughts, as are all MPS families! Wishing you a wonderful spring!
Mieke Embry (Mom to Luke, MPSIII-A) www.caringbridge.org/al/lukeembry) <embry10198@windstream.net>
Moody, AL USA - Thursday, May 1, 2008 12:34 AM CDT
Dear Patty and Jesse.
Just stopping in to say your site looks beautiful and I am glad things are going so well for you all these days. Thanks for all your prayers for Chase and I . I think of you all the time and am so happy you are working all things out with the school too. YOu are an amazing mom and friend,.Love Rosemarie and Chase
Rosemarie and Chase 16 yrs old with hunters <rveliz@nac.net>
Newton, NJ usa - Thursday, April 24, 2008 12:49 AM CDT
Hi Jesse,just popped in to say hello, glad hear that the needles were ok for you. lots of hugs Jenny xx
jenny <gemini150671@aol.com>
torquay, england - Wednesday, April 23, 2008 11:02 AM CDT
www.caringbridge.org/hi/jasminmay <riaheap@aol.com>
UK - Tuesday, April 22, 2008 1:37 PM CDT
Dear Patty and Jesse,
I just wanted you to know that even though I haven't stopped by in awhile, you both have not been very far from my mind. I keep you in my prayers and think of you so often.
Sending you hugs and kisses from Herhsey
Donna Kay and Tyler
www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA USA - Monday, April 21, 2008 9:57 AM CDT
Hi Jesse and Patty
Just stopping by to say Hi and see what's happening. Glad to hear everything is going so well. I can't believe Jesse is going to be 13! Looking forward to see photos from his party.
Hugs,
Kim & Scotty MPS II
<cottons@earthlink.net>Modesto, ca - Friday, April 18, 2008 9:20 PM CDT
Will keep Jesse in my prayers. Can't prove why it works, but prayer does work. Hope, especially, that common sense will prevail with the school system. Also that the health care provided will support him. Love, charla liilis
....coworker of Tim's.....
Charla Lillis
ROCKVILLE, MD United States - Friday, April 18, 2008 11:32 AM CDT
Happy Belated Birthday, praying you had an awesome party.
Melissa and hailee
http://www.caringbridge.org/visit/haileesangels
melissa <angels4hailee@nc.rr.com>
- Sunday, April 13, 2008 10:24 AM CDT
Thinking of Jesse tonight. I can't believe he will be 13.
Tina & Angel Lance(md/lance) <mommy2alilheroplus1@comcast.net>
- Saturday, April 12, 2008 10:28 PM CDT
Hi Patty & Jesse! So, so pleased to hear that Jesse is doing well, what fantastic news! Thank you so much for your prayers for Georgia, means so much to know you're thinking of her. Lots of love & hugs, Louise & Georgia xxxx
louise lewis (mum to Georgia)
chepstow, uk - Thursday, April 10, 2008 1:55 PM CDT
Patty I am so happy that things are going so well this week. You need a break every now and then!! Happy Birthday to you and Jesse. 13 miraculous years, praying for 13 x 13 more...Praying the accupuncture helps. Misty
Misty Luthcke <Mluthcke@netzero.com>
- Tuesday, April 8, 2008 4:16 PM CDT
Hi Patty, I am delighted that you have so many good things going on right now. Knowing that Jesse is about to become a teenager and is doing so well(in spite of earlier prognosis)brought tears of joy to my eyes. I hope that you and Jesse both have wonderful birthdays. I certainly cannot forget his as he and I share the same birthday. I look forward to meeting you at the run/walk in May.
Cathy Abernathy (grandmother to Izzy and Jay)
CatherineAbernathy <cabernat@truvista.net>
Chester, SC - Tuesday, April 8, 2008 9:15 AM CDT
John Preston,
Just wanted to let you know we're thinking of you
Dick & Pat Daupert
Lebanon, In united states - Tuesday, April 1, 2008 7:44 PM CDT
Stopped by to say "Hello!" Hope you had a WONDERFUL Easter, and Spring Break Week!
Stacey and Lucas
http://www.caringbridge.org/visit/hopeforlucas
- Saturday, March 29, 2008 8:50 AM CDT
Hi Patty,
Hope you've had a glorious Easter. I love that song "Because He Lives"! One of my favorites. Hope to see you in May.
Love,
Rebecca & Nathan
www.caringbridge.org/visit/nathanbivens
Rebecca Bivens
- Sunday, March 23, 2008 6:44 PM CDT
Happy Easter to all of you. May Easter bring our babies renewed life! Love from The Luthcke Family
Misty Luthcke <Mluthcke@netzero.com>
- Sunday, March 23, 2008 12:11 AM CDT
HAPPY EASTER!!
Thanks for signing my guestbook.
Love from Vibeke
Vibeke <vibekehovd@hotmail.com>
Skaun, Norway - Sunday, March 23, 2008 7:46 AM CDT
Happy Easter to you all!
levenmethunter.web-log.nl
Sjon and Kariem
The Netherlands - Sunday, March 23, 2008 2:08 AM CDT
Happy Easter Patty and Jesse
Ashlee www.caringbridge.org/canada/ashlee
Ashlee <mwccamper@yahoo.ca>
- Saturday, March 22, 2008 5:25 PM CDT
Trisha Offenbacker <trishaoffenbacker@yahoo.com>
Travis AFB, Ca - Saturday, March 22, 2008 3:03 PM CDT
Glitter Graphics & Comments
hope you guys have a great Easter. So Glad that Jesse is doing great! Praying it continues to stay that way!
Take Care and God Bless
Deon, Ricky and Kenny
www.caringbridge.org/visit/nelsonboys
Deon Nelson <thumpernel@sbcglobal.net>
Lawton, OK - Saturday, March 22, 2008 10:28 AM CDT
Hugs,
Kim & Scotty MPS II
<cottons@earthlink.net>Modesto, ca - Friday, March 21, 2008 8:20 PM CDT
HAPPY EASTER TO YOU ALL
With lots of Love
Ria & Jazzy
xxxxxx
www.caringbridge.org/hi/jasminmay <Riaheap@aol.com>
England - Friday, March 21, 2008 3:36 AM CDT
Hi Patty and Jesse,
Just wanted to say hello too and let you know where the photo of Daniel is taken. It's our local river - about 10 minutes walk from here! You can swim in it too!
Praying for 'everything' to go well with Jesse.
Big hugs,
Elizabeth and Daniel
Elizabeth Schüpbach
Bern, Switzerland - Monday, March 17, 2008 7:19 AM CDT
I cannot believe that this late in the school year they would try to make changes such as this one. Jesse is just now doing well. Please leave him in his class with his aide! I am so sorry for the on going troubles, Patty. I hope all works out for the best. I am so glad the sizures are slowing. Praying for you all, Misty
Misty Luthcke <Mluthcke@netzero.com>
- Sunday, March 16, 2008 9:21 PM CDT
GUYS OOF
MICHEAL ONYEZE <MAGA@YAHOO.COM>
NY, NY USA - Thursday, March 13, 2008 5:51 AM CDT
Stopping by to check on Jesse. Glad to hear that he is doing well and his new nurse is working out for you.It is truely a blessing to have someone who cares about our children. Hopefully spring is just around the corner.
Sharon and Andrew Cochenour <scochenour@hotmail.com>
Clarksburg, Ohio USA - Wednesday, March 12, 2008 9:17 PM CDT
Stopping in to say hello :)
caringbridge.org/ca/coltonmeyer
Laura
ca - Sunday, March 9, 2008 8:29 PM CDT
Hi Patty it has been so long since we have signed in Jessy's journal we do appologize for that
I am glad to hear he is doing well.Love the picture of him and dad on the boat he just looks great.
Take care
Anne and Sebastien
www.caringbridge.org/visit/sebastiencairns
Anne Cairns <buzz.cairns@sympatico.ca>
Markham, Ont Canada - Saturday, March 8, 2008 11:18 AM CST
It's been too long for me not checking in. Sorry, but glad to hear that Jesse is doing well. So when is the walk/run in SC, and where in SC? Maybe I could make it if I can find a sitter.
Hugs,
Rebecca & Nathan
www.caringbridge.org/visit/nathanbivens
Rebecca Bivens
- Wednesday, March 5, 2008 10:52 AM CST
Trisha Offenbacker <trishaoffenbacker@yahoo.com>
Travis AFB, Ca - Monday, March 3, 2008 11:27 AM CST
Hello Patty! I'm sorry to hear about Jesse's seizure. Jonathan had is third so far - all different. The last one, he spent the next day very tired, very calm and then the following day he made a 24 hour day without sleeping - being very happy (even thought it is nice to see our kid happy, 24 hours without sleeping is very long). Something is definitly wrong in his brain. I do agree with you that it is very hard to watch and be so helpless. I'm also trying to find a pattern - so far nothing. We did try the hyperbaric chamber in fall (40 sessions) with nothing gain on the cognitive part (this was my highest hope). After 20 sessions, Jonathan started to regain strength in his legs (since august Jo was loosing more and more his ability to walk) so this is good.
Well I pray for your strengh and that you may find what could help Jesse. Christiane and Jonathan
christiane parent <p.chayer@videotron.ca>
- Sunday, March 2, 2008 4:08 PM CST
kathy and ^^katilynn^^ preston <katilynnsmom@yahoo.com>
tomahawk, ky usa - Saturday, March 1, 2008 11:38 PM CST
I have a few very good friends with children who have either fought or are fighting MPS diseases (Hurler's, Hunter's & Sanfilippo. So, I have just been browsing webpages to pray for folks and stumbled upon yours. I was also visitor number 35,000 so I decided I'd just sign in and let you know I was here. Take care!
KhalitaDuke Peds BMT Aplastic Anemia <khalita@yahoo.com>
Lexington, NC - Saturday, March 1, 2008 5:33 PM CST
I love the new main page photo! He's so cute. I can't wait to meet him ! Love from Misty
Misty Luthcke <Mluthcke@netzero.com>
- Friday, February 29, 2008 11:44 PM CST
Hi Patty
Thanks for the great update! Glad everyone seems to be doing well. Definitely sounds like your prayers were answered with Jesse's new nurse! That would be awesome if everything works out and he stays with Jesse when school is out.
Hugs and Much Love,
Kim & Scotty <cottons@earthlink.net>
Modesto, CA - Friday, February 29, 2008 4:32 PM CST
Hello Patty;
I really liked the latest update, it has been awhile since I last checked.
We are all well and I miss coming to Baltimore.
Steve
Steve Bridge <steveb395@aol.com>
Elyria, OH USA - Friday, February 29, 2008 3:27 PM CST
Hi Patty,Jack and especially Jesse!
I love the picture of Jesse. I'm going to print it and hang it on my board behind my desk with all the other kids.
It is heart-warming to hear the the time and effort you spend loving Jesse. So many other children do not have that kind of devotion, even healthy children. Hats off to you. He is one lucky boy to have a dad and mom like you. Patty, are you getting sponsors for your walk? Or, will there be another fund-raiser here at home?
Love to all,
Aunt Nancy
Baltimore, MD USA - Friday, February 29, 2008 8:13 AM CST
Hi Patty!
So happy to know every thing is going well at your side. I always admire your strength and all the love you have for Jesse. You are a great mother.
I also hope and pray hard for no more seizures for Jesse. I know how awful they are and how hard to watch your child go through it.
Nice picture of Jesse. Sending lots of love and hugs for him.
Abeerah, Khansa & Zahra
Tayyaba Beg <Tayyaba@helpourgirls.com>
NJ - Thursday, February 28, 2008 10:32 PM CST
Glad to hear things are looking up. Sending love and prayers your way.
Karen <karenhooper@aol.com>
St Petersburg, FL - Thursday, February 28, 2008 7:47 PM CST
nice site very neat and cleard i love it thanks
MGBADA
MGBADA MAGA <ewutogo@yahoo.com>
ACCRA, GHANA - Thursday, February 28, 2008 4:18 AM CST
I SO LOVE THE SITE IS VERY NICE AND OK THANKS AND JOB WELLDONE
MGBADA MAGA <ewutogo@yahoo.com>
ACCRA , GHANA - Thursday, February 28, 2008 4:16 AM CST
I just realized that it was awhile since I signed your guestbook.
I wanted you to know that I'm thinking of you today, and always.
Love from Vibeke
Vibeke <vibekehovd@hotmail.com>
Skaun, Trondheim, Norway - Tuesday, February 19, 2008 4:54 AM CST
Patty, Lucas has not been sleeping well. What exactly are the amino acids that you give Jesse??
Jill Valdez <valdezjill@hotmail.com>
Oshkosh, WI USA - Monday, February 18, 2008 9:33 AM CST
Hello!
I just had to pop in and wish you a happy Valentine's Day!
Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III)
BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com>- Thursday, February 14, 2008 3:27 PM CST
Patty,
I am so glad Jesse has recovered from the incident at school, and the situation is getting resolved. It surely could have ended a lot worse! Give Jesse hugs for me.
I'm close by if you need me.
Love,
Liz
Liz O
Cockeysville, MD USA - Saturday, February 9, 2008 5:42 PM CST
Hi Patty
It was great talking to you today! It is so scary to think of what could of happened to Jesse.
Give Jesse big hugs and kisses for us.
Love,
Kim & Scotty
Kim and Scotty <cottons@earthlink.net>
Modesto, CA USA - Saturday, February 9, 2008 9:21 AM CST
Hey, Patty & Jesse! Sounds like Jesse has been keeping you on your toes! What a scare! Luke seems to think EVERYTHING is for the mouth! So, we have to be very diligent with him, and he is so very fast! Fortunately, they have this figured out at his school and have been WONDERFUL about keeping a close eye on him and giving him things that are too large to ingest. (I love our school staff! They are on top of things and work with Luke very well.) I hope you get issues at school worked out for both Jesse's safety and your peace of mind! Take care ... and know that I think of you more often than I sign in!
Mieke & Luke (www.caringbridge.org/al/lukeembry)
Mieke Embry <embry10198@windstream.net>
Moody, AL USA - Wednesday, February 6, 2008 4:23 PM CST
Holy Moly what a scare. Patty you opened my eyes to double check on these things. As always you are a fountain of knowledge that I am thankful for.
Love you guys,
DK and Ty
www.caringbridge.org/visit/tylerlangan
Donna Kay Langan <langandk@hotmail.com>
Hershey , PA US - Wednesday, February 6, 2008 12:05 AM CST
I am so glad to hear that Jesse is eating and swallowing well again. He is such a trooper and you are such a fighter. Keep up the good work and good luck with the school issues. Misty and Will
Misty Luthcke <Mluthcke@netzero.com>
- Monday, February 4, 2008 7:20 PM CST
HUGE hugs from England to you Patty, Jack & Jesse and Snake!!!
Love
Ria & Jasmin
xxxxx
www.caringbridge.org/hi/jasminmay
Ria and Jazzy <riaheap@aol.com>
England - Wednesday, January 30, 2008 10:23 AM CST
Hello Jesse,
Thank you for visiting and signing Vidya's guest book. My best wishes to you and I am sure you will face life with courage and fortitute. Best wishes from Vidya , aged 12, MPS III
Kasturi Rangan( Vidya's father) <kasturi_sys@satyam.net.in>
Bangalore, India - Wednesday, January 30, 2008 8:14 AM CST
It was great to know about the life of a Sanfillipo child. I am training in the field of inborn errors of metabolism and have seen quite a number of patients. Jesse is certainly amongst the best brought up child, with such sincere and dedicated parents. All the best!
S Bijarnia
Sydney, NSW Australia - Tuesday, January 29, 2008 5:39 PM CST
Hello Jesse,
My goodness that must have been terrible that thing stuck in your throat. So glad you have such a clever Mummy to get it out! Glad to hear too that those seizures are settling down a bit. I bet you feel much better now.
Hope school gets sorted out Patty. It's so hard when you can't trust the people who care for our children. Daniel got a bite from another boy, but I must say he is not always innocent himself and has given a few nips and squeezes too! Lol!
love to you all
Elizabeth and Daniel
Schuepbach Elizabeth
Bern, Switzerland - Monday, January 28, 2008 4:31 PM CST
Hi Guys I was so shocked to read about what happend I know exactly how you feel about Keeping Jesse Home I am going through this with Ricky as you already know there is nothong that us moms won't do for our babies I pray that you can get things worked out with school. I am so happy that he is doing okay! Boys and I sending you and Jesse Hugs!
Take care and God Bless
Deon, Ricky, and Kenny
www.caringbridge.org/visit/nelsonboys
Deon <thumpernel@sbcglobal.net>
Lawton, OK - Sunday, January 27, 2008 2:12 PM CST
Patty- You are my HERO...a VAST pool of knowledge!!! I wish you were sitting with me at every doctor's appt., every IEP, and every chaotic moment at home. You would bring me so much peace. May 2008 bring blissful moments to Jesse.
Hope & Prayers-
Shannon Rieg...Cooper's MOM
Shannon Rieg <shannon.rieg@hotmail.com>
- Friday, January 25, 2008 8:59 PM CST
We just dropped by to check you today.
Jodi and McKayla
Jodi Phelan <jodiphelan@hotmail.com>
Sherwood Park, AB Canada - Friday, January 25, 2008 0:11 AM CST
Hey, Patty! Heard about Jesse's throat issues via Lucas' site. Ellen Bowman was in your shoes last fall with Andrew! He ingested a portion of the foam from his car seat and was having major issues. They were so very scared ... but extremely relieved to find it and realize WHAT it was that was causing his respiratory distress. We were at the hospital with them when they went in to retreive it. It was truly scary!! I'm so thankful that you guys got it out and that he is doing better. God is good!!! Hope the rest of the month is uneventful for you! Ha! Take care ...
Mieke Embry <embry10198@windstream.net www.caringbridge.org/al/lukeembry>
Moody, AL USA - Thursday, January 24, 2008 12:38 AM CST
Dear Patty and Jesse, I just read on Lucas site about your big scare...Oh my gosh, I just feel so bad that it happened, yet so thankful that it worked out for the best. Always thinking of you.
Donna Kay and Tyler
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA USA - Tuesday, January 22, 2008 7:42 PM CST
You gave us quite a scare big guy!! Glad you are okay...I have been thinking about you and mom all day! Tell your teachers to do a good cleaning of your classroom and put all little pieces far away....or better yet...throw them away!!!
Stacey and Lucas MPS III B
Cedar Rapids, IA - Tuesday, January 22, 2008 5:15 PM CST
Patty, I read on the Montgomery's website that Jesse was in the hospital. I am praying for you all. Misty
Misty Luthcke <mluthcke@netzero.com>
- Tuesday, January 22, 2008 3:16 PM CST
I sure hope you have a wonderful 2008!
Best wishes for the whole family!
Love-
Tabby <karenpuddn@comcast.net>
- Thursday, January 3, 2008 9:12 PM CST
Best wishes Patty in the New Year give Jessie a hug for me!
Holly La Barre <ihorsewoman@aol.com>
Conowingo, MD USA - Wednesday, January 2, 2008 3:40 PM CST
hi patty and jesse
what a wonderful website...wishing you the best for 2008
hugs
sonia lanese and andrew (MPS II)
www.caringbridge.org/visit/andrewlanese
sonia lanese <nick.lanese059@sympatico.ca>
ont. canada - Wednesday, January 2, 2008 12:23 AM CST
Dear Patty and Jesse,
Loved the photo slide show from Christmas! Thank you for sharing.
Thank you also for reflecting on 2007. You are such a blessing to me for being the wealth of information that you are and the mother I strive to be. I keep you in my prayers and think of you so often.
Happy New Year with Love,
Donna Kay and Tyler
Donna Kay Langan <langandk@hotmail.com>
Hershey, PA US - Tuesday, January 1, 2008 10:08 PM CST
HAPPY NEW YEAR!!
http://www/caringbridge.org/visit/hopeforlucas
Stacey and Lucas
Cedar Rapids, IA - Tuesday, January 1, 2008 9:59 AM CST
Click here to sign the guestbook.
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |