- Associated Press - Sunday, August 20, 2017

COLUMBUS, Ohio (AP) - An Ohio woman whose daughter died of a rare blood disorder has turned her family’s tragedy into a charity to help other children.

Nikki McCarthy, of suburban Columbus, channeled her grief into the nonprofit organization Sam’s Fans. It provides music and art therapy to young patients at Ohio hospitals, NBC’s “Today” reported (https://on.today.com/2uJYMMA ).

McCarthy’s daughter, Sam, spent years in and out of hospitals because of fanconi anemia, a rare genetic disorder, before her death eight years ago.

“She was spunky. She was very strong for a teeny, tiny person,” McCarthy said. “My husband said she had an electric personality.”

A bright spot in Sam’s often painful treatments, including a bone marrow transplant at age 11, was working with music therapist Brian Schreck.

“When you’re in a bone marrow transplant unit, it’s the equivalent of maximum security prison in a hospital,” said McCarthy’s husband and Sam’s father, Dan. “You know, music was that ticket to escape that world.”

He and the couple’s three sons have raised more than $150,000 toward the nonprofit’s work.

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,” McCarthy said. “It’s just such a special gift to have that.”

The song, “On and On,” includes a line that that McCarthy said epitomizes what the family went through: “Nothing worth anything ever goes down easy.”

“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,” she said.

“Today” recently arranged for Kearney to surprise McCarthy as she was working with her charity at Nationwide Children’s Hospital in Columbus.

“I heard the story and, yeah, it stuck with me,” Kearney said, describing it as “one of those things that you don’t forget.”

McCarthy said she senses her daughter’s constant presence and hopes the charity’s work would make her proud.

“You always want your child to make an impact on the world,” she said. “She didn’t have very much time to do that. This gives her life meaning.”

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