Hello everyone,
Even know we did not make it in the top 2 finalists for Deerfield High school Grant to benefit United Leukodystrophy Foundation,presentation was a great experience and it was worth it. We need to spread the awareness of this often fatal -life threatening ,brain degenerative disorder that is misdiagnosed with ADHD nearly every time in X-linked child cerebral form.
We have had week of up and downs in Sammy's condition. Eventually toward the end of the week he bounced back ones again . But before that happened we went though this week with a hope for better ,doing all possible to better understand what plan should be developed for the future few weeks . Many friends ask what are prediction for the future? What are Doctors saying ?
We wish it was that easy. Many life threatening conditions are predictable and researched enough that Doctors can tell you what will happened next. In our situation ALD in rare and each case is unpredictable. All we know that Transplant can stop further spread of brain damage if it's done with in required time frame and its successful. Even than there are no guaranties it often takes 12-18 month for transplant to start working.
We are playing 'GUESS' game at this point. Since Sammy can't speak or see anymore we left wondering how much does he understand? Is he depressed ?
We know for sure that Sammy knows voices of every member of our family .He knows how much we love him ,he gets countless hugs ,kisses and positive energy. We comfort him and enjoying his company every day every hour every minute.I hope that he can connect and enjoy our vacation next week.
We are going to visit Mikey Mouse house-we are going to Disney World .!!!
The whole family will be reunited and going together . This is our time to make precious memories of being together,bond and ones again remind one another how important family is !How fragile our life is! How we can't afford to waste it on small stuff!
Can you forgive and forget? Can you help some one else to move on if you feel stronger? Can you think with your mind rather than your heart?
I struggle every day to find answers to this questions going trough our path one step at the time.
This is our test and we must complete this task to our best ability to safe our Sammy's life.
Coming closer to RoshHashanna -we know that miracle can happen-we will be waiting for it.
XOXO Sammy , Mom,Family.
Saturday, September 27, 2008
Thoughts
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4 comments:
We all wish Sammy and your family the best. If there is anything we can do please let us know. My son Brian, who was in Sammy's class prior to the illness, doesn't know what to do, some times he will come home and say 'mommy I saw Sammy going for a walk, but I wasn't sure if he remembers me or if I could talk to him.' I want you to know Brian does think of Sammy, but is unsure of what he could / should do when he sees him around the block.
It is a knoble of you to educate others, and getting the law involved to work with the insurance companies.
We are just down the street, please don't hesitate to ask for anything, if Sammy ever wants a play date, or just to have others around, I'm sure both my boys Zach & Brian would love to spen time with him.
All our best to you,
Clint & Trisha Case
Kayla, Zacahray & Brian
Enjoy your vacation and time with your family and make precious memories of being together. I wish best for Sammy and his recovery. You are a wonderful mother and your kids are lucky to have you as a mother.
i hope the new year will bring you new blessings and new energy! may hashem heal all these needing a complete recovery!
Dear Sammy and mom,
I am Kayal, mother of Aditya, who also has ald and has undergone bone marrow
transplantation in May 2008. I read your blogposts.
We live in New Zealand and the transplantation was done there. Now we are in
India, to receive "embryonic stem cells" which can reverse ald and help remyelination.
Aditya is receiving the stem cells and we are awaiting to see the miracle.
I wanted to convey this to you so that you can also treat Sammy here!
I am giving the website of a patient who received stem cells from the same doctor.
http://amandaboxtel.wordpress.com/
You please go through this site to get a clear idea about the treatment.
You are most welcome to contact me over phone. My mobile is +91 9717278944.
I am curious to hear from you soon. It is better to start the treatment as soon as
possible.
Please contact me for further queries. I wish a quick recovery for sammy!
with love,
Kayal.
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