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Adrenoleukodystrophy (ALD) Online Support Group

About the New Member Check In category

#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you

#2

Hello. My name is Jillian. My son Grady’s (8, 7 atvtge tome) was diagnosed 8/17/18. With a Loes score of 10. I thought he was having a hard time hearing me and felt something was wrong. Pushed for an MRI and was diagnosed. He had a bone marrow transplant on 9/20/18 with a 10/10 unrelated donor match at Boston Children’s Hospital.
Grady is doing very well. Follow up MRI three weeks ago showed no progression.
We are still is such a whirlwind. The good and bad are so surreal.
I’m finally just letting myself look around and look for support groups and learn ways to support the ALD community.
We want to do anything and everything we can.
Thank you for adding me!!
Jillian :blue_heart: