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 - 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.
@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.
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´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!
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.
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
my little sister died of medochromatic leukodystrophy she was 2 turning 3 she would be 16 now and i miss her very much
24mockingjay 1 week ago
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
My sister Allison had MLD ;c
deltadime 1 year ago
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
tiffnbay32 1 year ago
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!
vanerou 1 year ago
I love you buddy!! Dad
rspraggins 1 year ago
Sam is a very strong boy & very lucky to have a very supportive & loving family! very inspiring!
God bless!
inejcyrei 2 years 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
You *are* amazing, Sam! Gentle hugs to you!
LynnNBoys 3 years ago
What a trooper. God Bless.
SmokeySCU 3 years ago