I-TEAM | Unfair odds stacked against 3rd-grader with leukemia
AUGUSTA, Ga. (WRDW/WAGT) - Amelia was perfectly healthy. The smart, shy third-grader at Greenbrier Elementary stayed busy with gymnastics and karate and she was looking forward to her birthday when it happened.
“Back in September, I noticed she had some easy bruising and then some gum bleeding, so that was a little scary, so we took her to the doctor and her blood count was way low,” recalled her mom, Salome Sookdieopersad.
After extensive testing, they got a diagnosis that changed everything.
Dr. Amir Mian is the division chief of pediatrics at the Children’s Hospital of Georgia.
“Amelia has a type of leukemia called AML and it is associated with a high rate of relapse,” he said.
For her parents, it remains a defining moment in their lives. “We could’ve never imagined anything like this happening to her, and we would never want this to happen to any other family.”
Since then, she has been through two rounds of chemotherapy, and she is responding well to treatment. But the fear is how soon until she relapses? And what then?
“It is just so unfair for kids to go through something like this,” says her mother.
But a cure is out there. It’s hiding in the bone marrow of a stranger and doctors just have to find a match.
“Without it, some patients do end up dying.” says Mian.
Amelia needs a bone marrow transplant in the next few months for her best chance.
Our I-TEAM found unfortunately, the odds are stacked against Amelia. National donor registries like Be The Match and DKMS connect donors with patients but finding a match depends on finding a donor who shares a similar genetic makeup.
“For Amelia, because she is mixed race from Asian and African American ethnicity, the donor pool is small,” says Mian.
How small? The I-TEAM found right now, Black patients only have a 29% chance of finding a match, Asian or Pacific Islanders only 47%.
Compare that to white patients, who represent the largest donor pool, increasing their odds of finding a match go up dramatically, to 79%.
One of the main reasons Black patients have a harder time getting a bone marrow match is a lack of donors. The I-TEAM found as of right now, only four percent of donors registered with ‘Be the Match’ are African American. Our I-TEAM found a study by the Medical University of South Carolina that identified major barriers in the black community: a lack of awareness that transplantation can save lives, fewer opportunities to donate, and that donating is free.
Kevin Johnson is Amelia’s dad.
“You don’t really get hit with this stuff unless it’s you, or someone you love, and that’s unfortunate.”
But you can help change Amelia’s odds and it starts with a simple cheek swab. You can register online, and you can even have a kit mailed right to your front door.
Miranda Parnell matched and donated bone marrow to save a 2-year-old child. She remembers how it started.
“(They) said ‘Hey can we swab your cheek? It’ll take a couple of minutes to sign up and you can save a life.’ And I was like okay cool.”
You may recognize Parnell from when she used to be a reporter here at News 12. Back in college, she signed up for the bone marrow registry. Eight years later, she got the call.
“I’ve never said yes to something so quickly.” says Parnell. “When they told me this was a 2-year-old little girl and I could possibly save her life, I don’t really need to know anything outside of that. Sign me up.”
Part of the trouble with getting donors to sign up is misinformation. They hear ‘bone marrow’ and assume the procedure is very intense, or painful.
“Of all the donations, this is probably the easiest one to do in terms of saving a life.” says Mian.
Up front, it is just a cheek swab. If you match with someone, there are a couple of options.
“Eighty percent of the time they just get the stem cells from the blood and it’s like a platelet donation where they’ll draw the stem cells from the blood and then it’s put back in your body.” says Sookdieopersad.
And the other 20% of the time, doctors can take bone marrow from the pelvic bone. That’s what happened with Parnell.
“You really just have to be willing to go take a nap. It’s not like you’re doing the surgery. You lay down, go to sleep, wake up, boom, hopefully the kid’s better... Why wouldn’t you do it?”
Some Tylenol and two days later, Miranda was back at work.
And, for kids like Amelia, your donation could mean more birthdays, more gymnastics meets, and more time.
“She’s artistic, smart strong, beautiful brave. It’s what I tell her all the time.” says Johnson.
And, Amelia isn’t alone. More patients need your help, too. We checked and at AUMC, doctors have performed 208 bone marrow transplants in the past two years alone.
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