Meet Robert and Evan   What is ALD?   Robert's 2001 Bone Marrow Transplant   It Runs in the Family   A Typical Day   A Parent's Perspective   You Are What You Eat   How YOU Can Help   Guestbook & Contact Info   Photo Gallery   Make-A-Wish Foundation®   Updates on Robert and Evan   ALD Resources	It Runs in the Family ALD is an X-linked genetic disease that is passed on from the mother's side of the family. Women are carriers of the disease and have a 50 / 50 chance of passing on the gene to their children. Sons will develop the disease either in childhood (in which case it is always fatal without treatment and surgery) or as adults. Daughters are carriers, and the vicious cycle starts again. Because ALD is an X-linked disease, a man with the adult form of ALD will always pass the carrier gene on to his daughters, but the gene will not be passed on to his sons. I am one of two children - my mother passed on the ALD carrier gene to me, which I passed on to both of my sons. My brother inherited the gene from my mother as well, and at 31 is showing symptoms of the adult version of ALD. Thankfully, he did not develop the childhood neurological changes that Robert has begun to exhibit. We discovered our family had ALD when my 14 year old cousin (the son of my mother's sister, who also has the carrier gene and passed it to him) had a skiing accident. He was in a coma and extensive bloodwork exposed the hidden genetic defect that causes ALD. Robert was 18 months old at the time and I was pregnant with Evan. My cousin died of ALD before his 15th birthday. I immediately had Robert tested, and to my disbelief and horror, the doctor's told me he did indeed have ALD. Even worse, when Evan was born I learned that he too had ALD. Since then, I have learned and researched everything I could about ALD and nutrition. I've researched my Mother's family history and have found the traces of ALD going back to the mid 1800's. Of course, ALD did not have a name back then, but the neurological-related deaths of male decendants is undeniably from adult-onset ALD. I'm determined to end the ALD that runs in my family with this generation. The exciting promise of gene therapy and other new medical technologies gives me hope that my sons will be cured and that my future grandchildren can grow happy and healthy.
Return to Top	Stem Cell Research Can Cure ALD