While riding in the car with his grandma, 2-year-old King Nazir Leon loves to sing the line “Way up I feel blessed” from Big Sean’s song “Blessings.”

He loves the crazy orange-masked turtle Michelangelo from “Teenage Mutant Ninja Turtles” and he loves puppies and chipmunks. But something he doesn’t love is the time he has to spend in the hospital receiving medical treatments through an IV.

King, who lives in Syracuse, was born with a hereditary immune deficiency, called a CD40 ligand deficiency. The condition prevents King from making enough antibodies to fight off disease, leaving him vulnerable to dangerous infections. King receives his monthly treatments at Upstate Golisano Children’s Hospital. Without a bone marrow transplant, King’s condition will likely become fatal, although his precise life expectancy is unknown.

“When I’m at work, I’m very depressed because he’s always on my mind,” King’s mother, Denisha DeLee said. “I never know when I’m going to get a phone call.”

Even if King gets a transplant, he will still have to continue fighting for his life. A transplant would simply increase his chances of survival, said Wendy Holz, a pediatric nurse practitioner at Upstate and one of King’s main medical providers. CD40 is a rare condition, and not much has been discovered about it since the 1960s, King’s mother, DeLee, said.

Despite organizing several donor drives and being on the national bone marrow donor registry, King has been unable to find a match for a transplant.

 

If he finds a match, King will need to travel to Cincinnati, Ohio, for the treatment. There’s a GoFundMe page for the trip, so people can donate to fund King’s medical and travel expenses. As of 6 p.m. Monday, the page had raised $415 out of its $5,000 goal.

King is not alone in his battle against CD40, though. His mother, two older sisters, grandmother and doctors, along with friends they’ve met during their journey, are committed to fighting for King.

Together, this year they’ve held bone marrow drives at the Elk’s Lodge in Syracuse, the New York State Fair, the Syracuse vs. Louisiana State University football game sponsored by Alpha Kappa Alpha sorority and attended a drive in Harlem, New York.

King’s most likely match is someone of the same race as him — African American. Out of the 12 million people on the Be the Match Registry, only 7 percent are African American.

DeLee works tirelessly to get King through his treatments, and her 10-year-old daughter Kenziah helps her take care of him as much as she can.

But King’s condition hasn’t been easy for the team behind him, especially his mother.

When DeLee found out about King’s condition three weeks after he was born, she broke down. This wasn’t the first time CD40 had shown up in her family.

“I shut down,” DeLee said. “I cried so bad because I watched my brothers suffer from it; I watched my mom fight.”

When DeLee was 5 years old, her brother, Davon, who was just a few years younger than her, died. When she was 19, her brother Daqwan died at age 17 after losing his abilities to walk and talk, a week after her daughter Kenziah’s first birthday.

“With my second brother it was hard,” DeLee said. “How my daughter is with King, I was like that with my brother.”

King’s condition has been a struggle for his sisters, as well. DeLee said her girls have to handle understanding that King requires more attention than them and needs more parenting from her. They also constantly worry if King will be OK. One day, DeLee opened her phone to see a text from Kenziah asking if she was going to lose her brother.

Despite hard times, King and his family have gathered new friends and supporters while trying to find King a transplant.

Some of the followers on King’s Facebook page, for example, have shown their support through gestures of kindness. Alana Morris sent King a pair of red Converse sneakers in his size that she decorated with stars, Teenage Mutant Ninja Turtles, and the words “Team King,” “He’s a fighter” and “bethematch.org”

At a bone marrow donor drive at the Syracuse Elks Lodge’s family day this summer, 15-year-old rapper Mahkai Bailey, who goes by his stage name Truth Speaker (the Voice of the Youth), met King for the first time, and was invited to his birthday party.

At the party, Bailey asked King’s family if he could write a song about him. The family agreed, and Mahkai and his father Freedom Allah Bey formed what would be a lasting bond with King’s family.

At the New York State Fair, Bailey performed King’s song when he opened for Nas. In Bailey’s song about King, he raps, “long live the king, long live the king,” and continues later in the song with the lyrics “he was born a king so let him lead” and “long live the king, we’ve all got your back.”

Since Bailey and Bey connected with King’s family, they’ve become closer, talking to or seeing DeLee almost every day.

“King gets out there and imitates everything (Bailey) says,” DeLee said, describing King trying to rap like Bailey. “(Bailey)’s like a big brother to King.”

Bey said that after they find a match for King, which he is hopeful that they will, the fight won’t be over. He sees King’s team continuing to seek out bone marrow donors for other children.

“This kid is a warrior; you rarely see him complaining. He takes it like a champ,” Bey said. “He’s a fighter.”

Published on December 7, 2015 at 10:34 pm

Contact Alex: aerdekia@syr.edu