Adrenal Lukodystrophy (sp?) runs in husband's family. It is carried by the moms and passed on to boys (not all boys).
When husband was still in jr. high his brother who was a couple of years older than him died from it (at the time they thought it was M.S. at an early age).
In 1997 another brother (in his 40s) died from it (they still thought it was MS).
In 2001 our nephew died from it-he was 11 (this is when they found out it was ALD).
A few years back one of our great nephews had it, fortunately he found a bone marrow donor early and was saved.
I have a couple of great nephews who are carrying the gene and are currently on Lorenzo's Oil and do not have any symptoms.
We just found out tonight that another of my great nephew's (I think he is about kindergarten age) has it and is starting to lose his sight. His only hope is finding a bone marrow donor soon.
It is a horrible disease. It is terminal unless it can be stopped by a bone marrow transplant. It tends to strike boys between 3 and 11.
Any prayers, bead rattling, or positive thoughts for a bone marrow donor to be found would be greatly appreciated.
When husband was still in jr. high his brother who was a couple of years older than him died from it (at the time they thought it was M.S. at an early age).
In 1997 another brother (in his 40s) died from it (they still thought it was MS).
In 2001 our nephew died from it-he was 11 (this is when they found out it was ALD).
A few years back one of our great nephews had it, fortunately he found a bone marrow donor early and was saved.
I have a couple of great nephews who are carrying the gene and are currently on Lorenzo's Oil and do not have any symptoms.
We just found out tonight that another of my great nephew's (I think he is about kindergarten age) has it and is starting to lose his sight. His only hope is finding a bone marrow donor soon.
It is a horrible disease. It is terminal unless it can be stopped by a bone marrow transplant. It tends to strike boys between 3 and 11.
Any prayers, bead rattling, or positive thoughts for a bone marrow donor to be found would be greatly appreciated.