Derek G.Follow

Derek has a rare blood disorder that is congenital from birth. Many of these children all go into AML or other forms of leukemia by the 10th year of treatment. They cannot undergo chemo or radiation until time for a bone marrow transplant (only cure) because neither has any affect. It just comes right back. We have been fighting this disease since Derek's was 2 days old. Each day is a new adventure for us. We have had a rough year in 2009 and also learned that his father, who had been his bone marrow donor, is no longer a match. We set out with many wonderful and brilliant friends and family nationwide to find a donor and were able to locate two 10/10 donor matches!!!!!! WOOO WHOOO! Thank you to all of them! Kostmann's is a very rare disorder, but a form of SCN and can come in many different forms. Many children die before they are ever diagnosed as it's extremely difficult to get a diagnosis. You can certainly check out our Foundation on Facebook. Derek's Light Of Hope FDN. We are non-profit and this are currently working for donations to his transplant hospital and the NNN for research funding to find a cure! If they can find a cure, it will affect ALL forms of cancers and they have come light years on their research in just the last 8 years!