ALD strikes in husband's family again:(

Discussion in 'The Watercooler' started by Wiped Out, Apr 8, 2013.

  1. Wiped Out

    Wiped Out Well-Known Member Staff Member

    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.
  2. Calamity Jane

    Calamity Jane Well-Known Member

    Oh that's awful. I had never heard of this disease - initially I thought it was Lou Gehrig's. I hope they find a match.
  3. tiredmommy

    tiredmommy Site Moderator

    Praying for your grand nephew. :(
  4. witzend

    witzend Well-Known Member

    How sad, and at such a young age! His parents must be beside themselves. Symptoms can often show up around age 9 - 10, so to happen so young is really not good. I hope that they will be able to get him the care that he needs. :(

    Does the nephew have any siblings? Girls can also have ALD, but because it's an X-Linked chromosome abnormality, and girls have two x chromosomes, they can have mild symptoms or be asymptomatic. The family should all be checked. There may be things that are happening with the girls and women that are being overlooked or not treated correctly that they should have looked at. Also, not sure if anyone is doing studies, but if they're looking for family DNA or tissue, it's good to donate even if you don't have it so that they can look at why, and why some are more affected than others.
  5. recoveringenabler

    recoveringenabler Well-Known Member Staff Member

    I'm sorry. Prayers and many caring wishes coming your way..........hugs too...........
  6. buddy

    buddy New Member

    How sad. I pray they find a bone marrow match. .....poor family.
  7. Dixies_fire

    Dixies_fire Member

    Praying for your family
  8. KTMom91

    KTMom91 Well-Known Member

    Hugs and prayers going out.
  9. cubsgirl

    cubsgirl Well-Known Member

    Praying for a bone marrow sad.
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Thanks for the prayers and good thoughts. I know my niece (the mother) is so devastated right now. She also has another son that she will need to have her other son tested. I am just so tired of this disease taking so much from husband's family!