Alexander was diagnosed with DC in November of 2005. With the grace of god Alex was diagnosed fairly quickly because his doctor had seen DC before. Alex was immediately started on Anadrol , this drug worked well for about three years when it suddenly stopped working all together. Alex became transfusion dependent in June of 2010, receiving red cells about once a month and later needing platelets around twice a week. We had consultations for transplant at both University of Minn and Sloan Kettering in NYC. We were certainly torn with the decision as to what facility to choose but were immediately drawn to Sloan, this was a better fit for our family. Our doctor spent so much time with us discussing our options for transplant, he is not only a brilliant doctor but also a wonderful man. So after much worry about finding a bone marrow match for Alex, we were contacted three weeks after consult; they had found 5 10 out of 10 matches for Alex.
In August 2011 we packed our bags and left for NYC to begin the process of transplant. On Sept 9, 2011 Alex received stem cells from his amazing donor. Alex continues to struggle to build a completely normal immune system, but we are told that when you have a t-cell depleted transplant this can take some time; anyone that knows Alex is aware that he does everything in his own time and style. For the first time in Alex’s life he doesn’t have to worry about bleeding and has enough energy to keep up with daily activities, we feel blessed. DC is a disease that will always lurk behind every aspect of his life, always having to check for lung abnormalities and the increased risks of cancer; he is a fighter and has shown this time and time again. I would love to talk to anyone who wishes to discuss this disease or the transplant process. I have gained a bit of knowledge regarding this disease and would love to share with others.