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11-year-old girl from St. Louis meets the donor who saved her life

USA TODAY logo USA TODAY 1/30/2020 Danielle Barker, Humankind
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Microsoft News For Good is proud to honor Laila Anderson and her bone marrow donor, Kenton Felmlee, as January's Local Hero of the Month. To recognize their compassion, inspiration and generosity for others, we are holding a fundraiser in their honor for Be The Match, the nonprofit organization whose mission is to make life-saving connections and improve outcomes for patients around the world in need of cellular therapy. To make a donation in support of this cause, click here. To learn more about becoming a donor, visit BeTheMatch.org

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"Laila, meet your donor."

11-year-old Laila Anderson's jaw dropped when he stepped onto the stage. She couldn't contain her excitement when she locked eyes with the young college student who helped save her life.

"He started running. I started running, like bam!" recalls Anderson.

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Watch Laila's reaction to seeing her donor in the video above.

"She was just a normal kid until one day."

Anderson was just nine years old when hospital visits became a part of her everyday life. She would regularly get headaches, vomit and become unresponsive. One day, she collapsed while getting out of the car.

"She was just a normal kid until one day, and then our whole world got flipped upside down," recalls Heather, Anderson's mother.

After 16 months of testing and two misdiagnoses, Anderson learned she had Isolated Central Nervous System HLH, an extremely rare autoimmune disease that results in her body making too many immune cells. Those immune cells were attacking her brain.

"Basically my cells can fight the bad stuff, but they can't really stop fighting, where my immune cells started fighting each other," says Anderson.

According to Jeff Bednarski, MD, PhD, a Washington University hematologist/oncologist at St. Louis Children’s Hospital, Laila is just one of 15 children in the world who have had a solely neurologic manifestation of the disease, which made it even more challenging to pinpoint a diagnosis.

On October 16th, 2018, a central line was put in her chest, and she began chemotherapy. She needed 10 weeks of chemotherapy to prepare for her only hope for a cure: a bone marrow transplant. Then, all they could do was wait for a match.

a person standing in front of a curtain: 11-year-old Laila Anderson embraces her bone marrow donor. © Be The Match 11-year-old Laila Anderson embraces her bone marrow donor.

Finding a match

An avid St. Louis Blues fan, Anderson has been attending hockey games most of her life. She's stood in the same spot for warmups since she was about four years old.

a person standing on a stage: Laila Anderson attending a St. Louis Blues game © Heather Anderson Laila Anderson attending a St. Louis Blues game

Anderson and her father first learned about Be The Match at a Blues game. They were having a drive and getting people to sign up to be bone marrow donors. 

"That really stuck with me. And then fast forward a year later, we're in that exact same spot, doing it for Laila," says Scott, Anderson's father.

Nearly 300 miles away in Lawrence, Kansas, 18-year-old Kenton Felmlee found himself at a similar Be The Match drive. As he walked up, his high school history teacher waved to him. Felmlee recalled her speaking about her own experience as a donor during class. Drawing inspiration from her and from his dad, Felmlee joined the registry.

Growing up, Felmlee didn't spend much time with his dad. It wasn't out of choice, though. His dad has common variable immunodeficiency disorder (CVID), a disorder that impairs the immune system.

"As I've grown up over the years, I've realized that he wants nothing more to have a normal life and spend time with his kids, but because of his condition, he can't," says Felmlee.

"That really impacted me to do my best to try to make a change in other people's lives, so that they didn't have to go through what my dad and my family had to go through."

a man in a blue shirt: Shortly after turning 18 years old, Kenton Felmlee registered as a bone marrow donor. © Kenton Felmlee Shortly after turning 18 years old, Kenton Felmlee registered as a bone marrow donor.

A life-changing phone call

Only three months later, Felmlee received a call from Be The Match; he was the best match for a 10-year-old girl. That was all he knew about her at the time. 

"I had to pull over because I couldn't stop crying. It was one of the best days of my life," says Felmlee.

When asked if he was still willing to donate, it was no decision. He immediately said yes.

"I got the call saying that one person is a perfect match, and they not only agreed to save Laila's life, but they said they were excited in capital letters," says Heather.

January 24th became Anderson's "new birthday" once Felmlee's bone marrow was transplanted in her. After the transplant, she spent one month in isolation to prevent infection. Several months later, Anderson rang the bell signaling the end of treatment.

"Now I am like any other kid. I'm a sixth grader. I go to school five days a week. The only thing I would say that's different from everyone else is I do take medications in the morning, right when I get home from school, before I go to bed. I have blood work once a month just to see how my counts are, how my bone marrow was accepting," says Anderson.

Prior to meeting in person, Felmlee and Anderson's family exchanged letters. Even though they didn't know each other yet, they already felt bonded.

"At the end of the letter that Laila had written me, she said, 'Your best friend, whether you like it or not,'" says Felmlee with a laugh.

"We're family now"

With Felmlee secluded in a private room, and Anderson backstage, the evening's events began. Felmlee and Anderson were to meet on stage at the Be The Match Soiree held in St. Louis on December 5th. The anticipation was almost too much for Anderson.

"I went to the bathroom a couple times, just like trying to find a way where you [Kenton] would be," says Anderson.

"They had people watching both me and you because they knew I was going to try to find him," responds Heather.

Finally the moment came. Anderson's family was called up on stage. As Felmlee ascended the stage, he and Anderson ran into each other's arms.

See their emotional embrace in the video above.

Anderson and her parents are now using their platform to spread awareness about bone marrow donation.

"Every parent deserves that call saying, 'We found a match,'" says Heather.

Click here to learn more about becoming a bone marrow donor.

This article originally appeared on USA TODAY: 11-year-old girl from St. Louis meets the donor who saved her life

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