MY name is Richard Hudelson, I would like to talk about Leukodystrophy. Me and my wife have a grandson that is 19 month old that is very sick.and he got Leukodystrophy, he just had a MRI done.and we dont know what came out with the MRI yet, all I now is he cant talk or talk or hold his head up or sit up right, and know he is having trouble drinking.I wood like to put my 10 cents in to work with our childern with all kind of diseases ,because your childern dont need to suffer anymore.I wood like to fight for our childern,But i cant do it by myself,for i need you people to work with me on this. My e-mail is hudels2@core.com,For i am disabled and i dont work,please back me up, and my phone number is 205-633-4360.All i know is Leukodystrophy only happens to males,and this been going on for 25 years and there were no cure for it , they told me that they dident have the money to keep it going.Look at this people 25 years in to this and they HAVE NO CURE.Yes people I am very upset.For our childern dont need to suffer anymore.
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Stop our childern from suffering
- By hudels2
- Posted June 21, 2009 at 3:56 pm · 6 replies
- In Other leukodystrophies
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Explore topics in this discussion:
Leukodystrophies Pain Stem cell transplant Leukodystrophy Bone marrow transplant
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- By marinemomkerry
- Posted June 21, 2009 at 7:54 pm
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you can reach me on gmail
marinemomkerry@gmail.com
or yahoo groups ALDkids
my son was tx for late stage ald 8 mos ago
- By varna
- Posted June 22, 2009 at 3:54 pm
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I'm not sure that a cure is in anyone's future for this type of illness...but preventing children from suffering needlessly is a plan that we should all embrace.
- By lexismom
- Posted June 22, 2009 at 11:01 pm
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I share your concern and pain. Leukodystrophy does affect girls too though. I have a six year old daughter that was diagnosed at 14mths with CACH, a very rare type of Leukodystrophy. When she was diagnosed there was a study at NIH in Maryland of the disease but due to funding they closed the study. I would love to help you in any way I can. My email is mamadrumm@aol.com, please let me know what I can do. My prayers are with you and your family. SMD
- By zeester2001
- Posted June 23, 2009 at 11:03 am
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I have a son that was diagnosed with metachromatic leukodystrophy (MLD) 6 months ago. I'm not sure if you are referring to a specific type of leukodystrophy or leukodystrophies in general. It would be nice to have a cure right now. The only thing that can be done for MLD is bone marrow transplant or stem cell transplant but my son was too far along to benefit from it (and even then it is not a cure and only slows down the progression). What kind of support are you looking for?
- By hudels2
- Posted June 23, 2009 at 5:26 pm
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What i am going to do is, I am go to a point some people to help me call D.C and this will be after i call Leukodystrophy phone number, and see how we can help them out. then i will call D.C to see if i can get there help on funds and see if i can push the fund thur,This why i need a lot of help from a lot of people,If i can get a lot of peole to call D.C maybe we can keep it going in funds but that is why i am looking for some people to stand with me and keep the call going threw D.C. And that is why i leave my phone number.and my e-mail also. let me say thank you.
- By Robbysmom
- Posted June 30, 2009 at 12:20 pm
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Have you tried www.ulf.org
That is the United Leukodystrophy Foundation
They may help you with resources. My son goes to Kennedy Krieger in Baltimore and the docs are wonderful. He has an unclassified Luekodystrophy but KKI is doing lots of research currently he is one of 13 children they know of that have his type of MRI findings.
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