Metachromatic Leukodystrophy
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Uploader Comments (keysgetaway)
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my little sister died of medochromatic leukodystrophy she was 2 turning 3 she would be 16 now and i miss her very much
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My sister Allison had MLD ;c
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This is heartbreaking, How is sam doing today?
I lost my 4 year old daughter Baylea on May 4, 09 due to MLD..we didnt know it was the family until it was to late..I have facebook and made a page to get awareness out and fight this
I pray for you and your family <3
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I´m studyin for some exams, and I was looking for Metachromatic LD, and the I found this video......It brought me into tears!!! I´m a Doctor but for me is so hard to see this. I really admire Sam and his family. It´s really a bless for him to have this UNIQUE SUPPORT!
God bless U Sam!
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I love you buddy!! Dad
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Sam is a very strong boy & very lucky to have a very supportive & loving family! very inspiring!
God bless!
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Sam-just diagnosed with Metachromatic Leukodystrophyby keysgetaway9,652 views- 0:46
118 days Post Transplant for Metachromatic Leukodystrophyby keysgetaway3,159 views
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Sam running on the Beachby keysgetaway2,096 views
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Adrenoleukodystrophyby sjwise28,727 views
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YO CREOby AngelaPalotes3,562 views
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Sam and SeaWorldby keysgetaway570 views
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ALD adrenal Leukodystrophy information (Zorenzo's oil)by thuggie17,303 views
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LEUCODISTROFIA METACROMATICA LUCIAby AngelaPalotes1,570 views
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Dillen's storyby kimberlyvess2,615 views
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Australian Leukodystrophy Support Group - Please helpby Leukodystrophy1256 views
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Sam walking - 18 months post transplant for metachromatic leukodystrophyby keysgetaway1,929 views
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Journey through Damien's lifeby springlady80542 views
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Judson's Legacyby catherinespark5,064 views
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Saving Sandra on Skynewsby Sandraspapa495 views
My name is John Esrey i have a daughter that was diagnose with MLD when she was 9 now she is 28 she is total bed riden but she still laughs at everything you say always in good spirits. she is my pride and joy i love her very much this is a terrible disease that they need to research more. We talk to her all the time to keep her laughing. their not a day that goes by that she don"t at least crack a smile.
johnesre1 7 months ago
@johnesre1 - I'm so sorry your daughter has MLD. It is a horrifying gut wrenching disease. Sam had a transplant 3 years ago and it feels both like yesterday and a million years ago. I wish you much strength in the years ahead.
keysgetaway 7 months ago
I have MLD and its going great whit my :D
maaike777777 9 months ago
@maaike777777 - I saw the video that was made of your progress and have a friend in the Netherlands who was kind enough to translate it for me. I am glad to hear things are going great with you. I have been wondering how you are doing.
keysgetaway 9 months ago
Hi I have a couple questions. 1 is what is the difference in Metachromatic and Adrenoleukodystrophy? Does Metachromatic Leukodystrophy affect the the Myelin shealths the same way in ALD? I first learned of ALD through the movie Lorenzo's Oil, and have since signed up to receive The Myelin Project newsletter. We sadly lost Lorenzo after a 24 year fight, He was originally given a 28 month prognosis. I hope your Sam's MCL(?) was caught in before any irreversible could be done.
PinkSander 3 years ago
Myelin Sheath-basically just different chemicals. Sam has had some inrreversible(for now) damage done, but he is still an incredible boy with a long life ahead of him. amazingsam . com
keysgetaway 3 years ago