Aldlife

Smith

Christie Smith — Wed, 14 Dec 2011 13:16:50 +0000

I am a mom with three sons. In 2003 we discovered that our two oldest boys had ALD and that possibly our baby could have it also. Up until this point my oldest son was healthy and an excellent student and athlete. My middle son had been diagnosed wtih Addisons disease the previous summer, but no one ever told us about ALD or checked my other children. After many test we later found out that my youngest son did NOT carry the ALD gene. We went to Fairview University in Minnesota where they treat this disease. My oldest son was not eligible for a bone marrow transplant but we tried an experimental treatment for him that was unsuccessful. My middle son had a bone marrow transplant with marrow from his younger brother and it was successful but in the process he lost his vision. After months of suffering and loss my oldest son died in Feb 04 at the age of 10. My middle son is doing fairly well, but is legally blind and has learning difficulties. We feel very blessed that he walks, runs, eats, hears, and plays like a normal boy. It has been a very difficult road and I find myself still angry many times at what has happened to our family. I read other ALD stories and find them so similar to mine, its heartwrenching. If anyone would like to talk with me please feel free to email. I talk with other families about what happen to ours in honor of my sons Bradley & Gabriel who have/had ALD…Bless you all

Journey

PATRICK LOWER — Fri, 09 Dec 2011 14:31:53 +0000

I AM 20 YEARS OLD. I WAS GIVEN A FULL COLLEGE DIV I SOCCER SCHOLARSHIP IN SAN FRANCISCO CA. MY 2ND YEAR DURING FALL TERM MY SOCCER COACH NOTICED I HAD CHANGED SOCIALLY, PHYSICALLY AND MENTALLY. I WAS A HONOR STUDENT AND HAD PROBLEMS WITH MEMORY AND COGNITIVE ISSUES. I WENT HOME IN DEC 2003 AND WAS DIAGNOSED WITH ADDISON GIVEN STEROIDS AND SENT BACK TO COLLEGE. I FINISHED WINTER TERM AND TOLD MY PARENTS I WAS NO BETTER. THEY KEPT TAKING ME TO DOCTORS UNTIL ONE PHSYCOLOGIST 4/04 DETERMINED MY MENTAL STATE AT 3RD GRADE LEVEL AND SENT ME TO A NEUROLOGIST WHO SAID THE MRI WERE NORMAL BUT MY PARENTS CALLED DR MOSER AT KKI IN MD AND 7//04 HE SENT TESTS RESULTING WITH POSITIVE DIAGONSIS OF AMN A FORM OF ALD. I AM STILL WALKING, DOING WATER AROBICS 3 TIMES WEEKLY PLUS WEIGHTS. I HAVE LOST 45 POUNDS. I AM TAKING MUSTARD OIL, AND GO DAY TO DAY. MY MOM IS MARILYN AND IS THE CARRIER. MY UNCLE DIED AT 24 OF UNDIAGNOSED ADDISON. MY SISTER IS AWAITING HER STATUS OF IF SHE IS A CARRIER. MY GRANDMOTHER WAS ADOPTED AND DR MOSER IS TRACING HER BLOOD LINES TO STOP THIS HORRIBLE DISEASE. I HAVE NOT RETURNED TO SCHOOL OR WORK BECAUSE OF MY MENTAL PROBLEMS. BEING AN ATHLETE I STILL WON’T TAKE ANY ANTIDEPRESSANTS OR EXTRA MEDS AS I RELY ON MY INNER SELF COURAGE. CALL ME ANYTIME! I WISH MY BEST TO ALL!

Zachary’s Journey

Michelle-Lee Horak — Fri, 09 Dec 2011 14:26:18 +0000

Zachary who is 7, is 10 months post bone marrow transplant, and is doing MARVELOUS!!! I was diagnosed 3 years ago, with AMN (Adreneumyleneuropathy), and was then told that Zachary would have a 50/50 chance of inheriting this horrific disease called ALD. I was in absolute shock, when we received the phone call that I and my family were dreading. Zachary was immediatly referred to Toronto for Sick Kids to the Metabolic and Genetic Dr, to start monitoring Zachary. Zach was asymptomatic, with NO neuroligical signs, or physicall signs of ALD, but they did find a very small abnormality on a MRI, which doubled in size in 6 months. I had done ALOT of research on ALD, and new that once anything showed on a MRI, that the medical intervention of a Bone Marrow Transplant would be offered. Zach was placed on the Unrelated Bone Marrow Registry, March of 2003, and 3 weeks before Xmas last year, we got the phone call that changed our lives forever. An 8 out of 10 match had been found, and we were given 4 weeks to prepare our son and ourselves for the most powerful, scary, emotional, and miraculous experience. Zachary went to heavens door and back as far as I’m concerned, and was just the most courageous boy for all the conditioning that must be done for the intervention of a BMT. I know its only been 10 months since the gift of life was given to Zach, but I now see such a wonderful, hopeful, future for Zachary and our family, and I dont seem to be afraid of the not knowing, I feel with such passion, that because of my symptoms showing so early(I was 27) that although I am dealing with AMN, it was a blessing from above, so that our beautiful son would be spared and saved from ALD. The experience is so still fresh in my mind, and I look at Zach, who is sooo back to himself, and must say I sometimes think I may be dreaming, but then I pinch myself, and realize that no I am not dreaming, but I have to say the future is so bright, and I will continue dreaming of a life without ALD, and vow to make it my mission, to do what I can to bring awareness, and research and fundraising so that someday No family will have to go through what our family did. Yes, it has made us stronger people, and to definitely live each day to the fullest, but it was the hardest, scariest, unknown experience that I personally never ever forget. I am very open to discuss any part of this experience and if you would like to have a glimpse of Zachary’s Journey the website is http://groups.msn.com/ZacharysJourney.

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