Two Central New York brothers are in urgent need of bone marrow transplants. King and Ace have a rare inherited immune deficiency, which makes it difficult for their bodies to fight off infections.

“It’s been, I can say, hard because I’ve been seeing King do it since he was 2, and now seeing Ace going through, like, a different stage than what King was going through, it’s real difficult because we still haven’t found a bone marrow match for both of them,” said Kenziah Leon, King and Ace’s sister.

King, now 12, and Ace, 6, were born with primary immunodeficiency, known as CD40 Ligand. It prevents their bodies from making the correct type of white blood cells, which leaves them chronically susceptible to infections. The deficiency almost exclusively affects boys.

Leon, the boys’ older sister who often views herself as their second mom, says she’s thankful for the community support.

“Because it’s really hard to just, like, just for us to put the word out, and seeing that their schools, other people, sharing their story and bringing it out,” said Leon.

“The family is the sweetest family; they’re all amazing,” said Emily Carpenter, vice principal of Huntington Pre-K-8 School.

Carpenter has been a huge advocate for the boys and their family.

“Use our connections, our community, who has really shown up. We’re hosting local drives. We’re trying to get the word out nationally. And really, we’ve just been blessed with so many people who’ve shown up and done their part by swabbing,” said Carpenter.

“When I look at my son every day, he’s losing weight. He’s not eating. He sleeps, like, literally on and off all day from school to home,” said Denisha DeLee, King and Ace’s mom.

She is no stranger to this, as she lost her two brothers to this rare deficiency. She says the last 12 years with King have been very challenging and now she’s on the same journey again with her youngest son, Ace.

“I get advice from another doctor in New York City, Mount Sinai… pretty much told me in order to fix a problem, he needs this bone marrow transplant within the next six months. Or if you know, things can go left,” DeLee said.

Between working full-time, raising her other children and caring for her two sons, it’s been a heavy load. But DeLee says she’s thankful for people like Carpenter who have been beside her.  

“I love them. They’ve been so supportive,” said DeLee.

“It’s just really a community effort,” said Carpenter.