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Adrenoleukodystrophy (ALD) Online Support Group

My nephew's ALD

#1

Hi my name is Patty my nephew Nathan was diagnosed with ALD at 3 years of age we found out early because of family history we’ve been on the bone marrow transplant waiting for a match for 8 years my nephew is Biracial and they can’t find a match we were called 2 years ago from Dr Wes Miller from Minnesota and was told about gene therapy and he said Nathan was a great candidate since he had a very low loes score well Nathan was next in line to receive this when we were called and they put the gene therapy on hold well our last hope was lost until we got the call that they were starting up the gene therapy trials again and Dr Miller called my sister to see if she was still interested we were estastic were told he needed a another MRI which was done a week ago the results were sent to Minnesota and we received an email not even a phone call that said he didn’t qualify his score now is 10 and a half and it haseems to be under a 10 Nathan is still in school smart as can be even plays chess and wins but now it looks like he’s going to end up dying they recommended a bone marrow with his father which would only be 50% match I don’t think those are very good odds anyway what are we to do now I can’t believe this is happening as we’ve known about this disease for 8 years and have got nothing done he’s my sisters only child and she’s completely devasted

Welcome to Adrenoleukodystrophy (ALD) Online Support Group
#2

Hello Cheecheenose and welcome to the ALD community. We’re glad you found us, but so sorry that you and your family are dealing with this devastating situation.

The person here who is most likely to be able to help you is Lindsay Hunter. Lindsay has a wealth of knowledge about ALD, and she knows a great deal about routes to finding help and advice.

Click on the “Member” tab, and then do a search for her name. Click on her name or her avatar (green butterfly) and at some point you will see a blue “Message” icon. Click on that and you can send her a private message.

Meanwhile, our community has been very quiet. Please don’t get discouraged if it takes a while to get responses to your questions.

Best of luck to you and your family

Seenie from Moderator Support

#3

Hello, Cheecheenose
Are you receiving messages from us? Drop by, say hello, and let us know how things are going for you.
Seenie from ModSupport

#4

Hi everyone so on April 6th my nephew Nathan will start Chemo for 11 days and on April 18th he begins his bone marrow transplant with his father’s bone marrow which is only a 50% match please say a prayer for him

#5

Thanks for checking in, Cheecheenose. Your nephew and the whole family will be very much in our thoughts.

Do come back to tell us how he is doing.

Seenie

#6

How is Nathan doing, Cheecheenose?

We’d love it if you would drop by and let us know how things are with the family.

Seenie from Moderator Support