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After Nikki McCarthy lost her daughter Sam to a rare blood disorder, she channeled her grief into a charity that honors Sam’s memory by providing the healing power of music to young hospital patients.
Hoda Kotb learned of Nikki and her work as part of TODAY’s Summer of Yes series, which let Hoda combine two of her loves — music and surprises.
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In this case, the music comes from a special song Nikki’s daughter sang for her mom. And later, Nikki was then surprised by the musician who recorded the radio hit.
At the center of it all is Sam McCarthy, who spent years in and out of hospitals because of fanconi anemia, a rare genetic disorder.
“She was spunky. She was very strong for a teeny, tiny person,” Nikki said. “My husband said she had an electric personality.”
That strength and temperament helped Sam get through a bone marrow transplant when she was 11.
“When you're in a bone marrow transplant unit, it's the equivalent of maximum security prison in a hospital,” said Nikki’s husband and Sam’s dad, Dan McCarthy. “You know, music was that ticket to escape that world.”
A bright spot to Sam’s treatment were visits by Brian Schreck, a music therapist the hospital brought in.
For Mother’s Day, Schreck helped Sam record a hit song by her mom’s favorite artist, Mat Kearney.
“I have this piece of music that — it’s her voice. And at the beginning of it, she says, ‘This one’s for you, Mom.’ And then sings this song that I'll have it forever,” Nikki said. “It’s just a special gift to have that.”
She noted that the song Sam sings, “On and On,” includes a line that says, "Nothing worth anything ever goes down easy."
“It was the story of what we went through,” Nikki said. “It was horrible, but I got this beautiful life, and she was a beautiful kid, and it was worth everything, even for a short time.”
After Sam died eight years ago, Nikki started Sam’s Fans, a nonprofit organization that raises money for music and art therapy for children like her daughter.
“Nik was able to turn what is incredible pain and create something that brings joy to both children and their parents,” her husband Dan said.
He and the couple’s three sons have raised more than $150,000 for Ohio hospitals to bring music and art into the hallways.
“Medicine can heal the infection, but the music changes your soul and it heals your soul,” Nikki said.
TODAY spent two days at a hospital documenting the impact of her charity work, ending the shoot with a musical performance that included a surprise for Nikki: Mat Kearney, the singer whose lyrics captured the McCarthy family’s story.
“I heard the story and, yeah, it stuck with me," the musician said, describing it as "one of those things that you don't forget.”
Dan, Sam's father, said Kearney represents "a living connection" for his wife, "back to this little girl that she loved with all of her heart."
“When Sam looks down, and every time a child is laughing or smiles, I think she would be thrilled happy to know that her mom is still helping other people. Because that's what Sam would do," he said.
Nikki said she senses her daughter around her constantly, and she knows she'd be happy with the legacy charity her life created.
“You always want your child to make an impact on the world. She didn't have very much time to do that,” Nikki said. “This gives her life meaning. I think she would be really proud. I hope.”
To learn more about Sam's Fans, visit samsfans.org.