WASHINGTON — Evan Aaron has incredible eyes and an infectious smile. The 6-year-old from Olney, Maryland, also has a genetic disorder that is so rare that only about three dozen cases have been diagnosed worldwide.
“He is unique,” his dad, Chris Aaron, says with a smile as he balances Evan on one knee.
Evan has DOCK8, a genetic disorder that affects chromosome nine and throws off the immune system. It was discovered in 2009 by a team at the National Institutes of Health, led by Dr. Helen Su.
Children with DOCK8 are prone to respiratory and skin infections, and that has been the case with Evan.
“He has had so many bouts of pneumonia that the airways in his lungs are becoming damaged,” says his father. “It seems to be getting worse every day.”
It is extremely frustrating for Aaron, a military doctor at Fort Belvoir.
He says when he first heard the diagnosis in February, “I wasn’t thinking like a doctor. I was thinking as a daddy.”
But this physician was able to follow all the details of a confusing condition, and — along with his wife Michelle — he began advocating for action to help all kids with rare diseases.
“You have got to get out on the grass-roots level,” he says, looking on as Evan shares zebra-striped ribbons — the zebra being a symbol of those whose diseases are exotic and outside the norm.
Though it took several years to narrow down the cause of Evan’s medical troubles, the good news is that a bone-marrow transplant can provide a cure for DOCK8.
So far, no exact donor match has been found for Evan, so doctors at the National Institutes of Health are going to try a different approach. This summer, they plan to do a haploidentical transplant, using bone marrow from Chris Aaron’s hip. It’s only a half-match, but they will make it work.
Meanwhile, the Aaron family is involved in helping to find donors for others who need bone marrow transplants by holding a series of donor drives next month. Aaron will sponsor one at Fort Belvoir. Michelle Aaron is working with the organization “Be the Match.”
Evan also is taking in all this medical talk. It turns out, he’s already intrigued with medical programs on TV, eagerly sharing a story he had seen about a woman with a brain tumor.
His grasp of medical technology is admirable for one so small. And when you ask him what he wants to be when he grows up, he doesn’t pause for a second. Evan says he wants to be a doctor, just like his dad.
