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Zachary’s Journey

10th December 2014

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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