Syracuse brothers need bone marrow donor match as time runs out

Two Syracuse boys are forcing a fast, local answer to a rare and dangerous disease. Ace Franklin, 6, and his brother King DeLee, 12, both have CD40 ligand deficiency, an immune disorder that leaves them vulnerable to infections and, doctors say, can only be cured with a bone marrow transplant.

Ace’s deadline is the most urgent. Doctors have told Denisha DeLee that he needs a transplant within the next six months, while King’s fight with the disease began when he was 2 years old. Their family has spent years searching for a compatible donor, and there is no matching donor in the family.

That urgency brought a swab-testing event to Syracuse University on Wednesday, April 23, where students and other volunteers were invited to join the registry and possibly become a life-saving match. Gift of Life Marrow Registry says people ages 18 to 35 in generally good health can sign up with a simple cheek swab, and the first step can lead to either stem cells or bone marrow donation. The registry says the best chance of a match comes from someone of similar ancestry because the tissue markers, known as human leukocyte antigens, must line up one-to-one. That challenge is especially stark for Black patients, and Gift of Life says only 29% of African American and Black patients find a match.

The stakes are not abstract. Ace and King are both described as being of African American and Black descent, and the family’s appeal has turned into a broader community push to widen the donor pool. Gift of Life says it has 545,392 registered donors, 44,899 donor matches, 6,511 transplants facilitated, 255,070 patient searches and 38,128 donor drives, but the need is still immediate for families like the DeLees. Ace likes Roblox and basketball. King likes gaming, football, Madden and Fortnite.

The effort is continuing with another swab event scheduled for May 15 at Luv Handlez in Syracuse. The family’s fight has pulled in the kind of citywide response Syracuse has seen before, including a 2018 marrow drive for King that drew more than 100 donors. For Onondaga County residents who can give, the next swab could be the one that gives Ace and King a real chance.