Family searches for replacement bone marrow donor for 4-year-old after original backs out

Atlanta - Now that Damon Evan's is old enough to talk, the 4-year-old from Conley can tell his mom Octavia Evans where he hurts.

Damon was born with the most severe form of sickle cell disease. He has been struggling with pain his whole life.

"It can just happen any time, any moment, any place, anywhere," Octavia Evans said. "I have to pay attention to how much he's playing, how much he's drinking, how much he's interacting."

His mother said Damon will point to his back, or his legs, indicating where he feels pain. Sometimes, it's so severe they have to go to the emergency department.

Medication and blood transfusions every two or three weeks have helped manage Damon's disorder. But, his physician, a pediatric hematologist at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, says Damon has been fighting an uphill battle for most of his young life.

"Damon has been through a lot, you know, in his four years of life in terms of enduring pain, hospitalizations and a lot of complications of sickle cell disease," Dr. Marianne Yee explained.

Yee believes there is a chance the preschooler could be cured of sickle cell disease with a bone marrow transplant. Employees at Children's Healthcare swabbed their cheeks at a Be the Match donor drive to see if they may be his perfect match.

It's a long shot.

"Many people share blood types," said Dr. Yee. "It's extraordinarily rare that two people would share the same bone marrow type. And, if you don't have the same bone marrow type, your body would likely, easily, reject it. Or, the bone marrow itself could attack the person's body."

Damon's best chance for a match would be a biological sibling, but he is an only child. Both his parents, Octavia Evans and her husband Damon, carry the sickle cell trait. That rules them out as possible donors.

About 70% of patients do not have a fully matched donor in their family. Like the Evans, they turn to the Be the Match donor registry, hoping to find an unrelated donor.

"So, the National Marrow Donor Program is made up of just healthy donors who have signed up, typically with just a cheek swab to look at DNA, to look at their bone marrow type," said Dr. Yee.

When Octavia got the call last winter, she couldn't believe it. A bone marrow donor from the registry had been found for Damon.

"He's a perfect match, he's the perfect age group, and he's willing to do it," she remembered the caller telling her. "I was so excited. Like, I'm telling family, friends, my church family."

The news couldn't have come at a better time for her family.

"From October to December, Damon was literally back and forth every week just because of the pain," Octavia said. "It would be that bad. So to hear [he had a donor], it was just, like, ‘Okay, maybe my son has a chance to be a regular kid.’"

For the first time, Evans said she allowed herself to start thinking about life beyond sickle cell disease, and how this transplant could change everything for Damon.

"We were close to it," she said. "We were literally knocking at the door, about to walk in."

But in August, just a month before Damon was set to begin chemotherapy to prepare for his transplant, his donor suddenly went quiet and stopped answering the hospital's phone calls.

"We just received the bad news that the donor decided not to respond, for whatever reason. We don't really know why," she said. "But, you know, we know that it does sometimes happen. It was definitely heartbreaking. I definitely cried about it."

Dr. Marianne Yee said over time, registered bone marrow donors may be medically disqualified or change their minds.

Some, she said, may have signed up for the registry a decade or two ago.

"A donor may listen to what it entails to undergo a donation, or they may just be at a time in their life when they don't wish to, or can't donate," Dr. Yee said.

Octavia Evans said she still has no idea why Damon's donor had a change of heart, but it means they will need to start their search for a donor all over again.

Because patients are most likely to find a match in their own ethnic background, Damon Evans' best match would be someone who is Black or African American.

"I just want people to be informed about how important it is, to know that you are really saving lives doing that," his mother said.

Even hospital employees are registering with Be the Match to see if they can help Damon, or someone else.

A blood stem cell donation can cure or treat over 75 diseases including leukemia, lymphoma and sickle cell, according to the Be the Match registry.

For now, Octavia Evans said they will continue with treatment and blood transfusions, hoping that Damon will get another chance at a cure.

"We're still going to just continue to live life as normal as possible, and we'll just wait," she said. "If you can, please be encouraged, be brave, be the match, because we need it."

To find a Be the Match donor drive in your area, or to sign up for the donor registry, visit their website.