Alexander was diagnosed with DC in November of 2005 at 3 years of age. Alexander is almost 4 years old now and holding his own. Alexander is currently taking Oxymetholone and although we are still trying this treatment there is still no clear evidence that it is working. Alexander has very low platelets and his red and white cells still fluctuate between somewhat normal and low. The biggest obstacle with DC is that the treatment options are so very limited and the drugs they do use only work on about 30 percent of patients. We dread the day that we are reliant on blood transfusions and that last resort option of a bone marrow transplant.
Having a child with DC can feel like a huge slap in the face: how could our child have a disease that affects about 1 in every 1 million births? We are still searching for the gene that has affected Alexander, to no avail. We are still hopeful to one day have another child that is DC free and will be a match for Alexander's bone marrow. We are very grateful that we live in a day and age that genetic testing can be done on just about any disease and hope that all the genes for DC are one day discovered.
Alexander is a sweet child full of energy and life, and if anyone enjoys life to the fullest it is Alex. Alexander is referred to as the "mayor", shaking everyone’s hand and talking to anyone who will listen. Alexander has a very strong stubborn side and I sometimes think that his willfulness is what is going to get him through. Someday when Alex is old enough to understand we will explain everything. Right now he is treated as a normal child who sees the doctor more often. We live each day for the positives and for the most part Alex's smiles and laughter far outweigh the obstacles to come.
Elizabeth
elizabethbng@aol.com
