Evan Aarons’ short life story begins as it does for many kids – he seemed healthy at birth. As he grew, though, he became increasingly unhealthy in small increments. He developed allergy symptoms that grew worse with time. He developed eczema. Then he had hand-foot-and-mouth disease multiple times. He developed chicken pox, despite being vaccinated. Routine laboratory testing revealed significant abnormalities. His lymph nodes began to swell at random spots across his body. He was hospitalized for pneumonia.
Evan’s concerned parents – Major Christopher Aaron and his wife Michelle – took Evan to specialists at Johns Hopkins Hospital and the National Institutes of Health. It was at NIH that doctors were finally able to give a diagnosis: DOCK8.
This disorder is so rare that only 32 cases are described in the literature. Genomic abnormalities such as deletions and mutations cause a host of symptoms which grow worse with age. Evan can be cured with a bone marrow transplant, but he needs it soon.
Evan’s parents know that the chance of recruiting a donor for their son is slim, but they have been active with the C.W. Bill Young / DoD Marrow Donor Program and NMDP/Be the Match because they hold out hope – not just for their child – but for all who need to find a well-matched donor.
Evan’s parents began their search for an unrelated marrow or stem cell donor, but they were quickly disappointed when none of the potential matches panned out. If you joined the bone marrow donor Registry – either through this organization or another – please be serious about your commitment. Finding there is no match for a loved one is terrible, but finding that all of your potential matches offer false hope is really devastating. If you won’t commit, please quit.
If you want to join the Registry – or if you want to voluntarily remove yourself from the list of potential donors – please contact us at 1-800-MARROW-3 or [email protected].