Family of girl with rare gene mutation now helping others find life-saving bone marrow

PITTSBURGH — A child’s fight with a rare disorder is inspiring others to offer a life-saving gift. Her name is Clementine Blackham.

“She got hers, but now we’re going to find everyone else’s,” said Tanner Blackham.

Tanner Blackham is talking about her soon-to-be 3-year-old daughter, Clementine.

“As of now, everything is perfect,” Tanner said.

We first introduced you to Clementine when she was 8 months old. She was born with a rare genetic mutation.

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“We all just sat there paralyzed in fear,” Tanner said. “We all said, ‘now what?’ You wait for a donor. We’re not waiting, we’re finding a donor.”

With the help of the community and a national bone marrow registry, the Blackham family found her match. She survived a bone marrow transplant as well as blood and platelet transfusions every three to five days.

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Now, their goal is to help other families like theirs by hosting drives across the world.

“All it takes is to swab your cheek, and you’re on there until you get called,” said DKMA Donor Recruitment Coordinator Iris Caldwell. “You may never get called. It just really depends if that person matches with you and at that time of need, you’re ready to go.”

At the second annual Clementine Block Party, the Blackham family launched Clementine’s Foundation. They also started Clementine’s Coffee Co., a mobile coffee trailer, inspired by this toddler’s love of coffee during her chemo treatments.

“Something that Clementine clung to and fell in love with was coffee, and she was one,” Tanner said. “So people giggled when the only thing she would take by mouth was coffee.”

So between brewing coffee, encouraging blood donations and growing the bone marrow registry, this family says they’re grateful this dreaded diagnosis happened to them.

“We’re so grateful that we were the first, and that may sound funny that you’re grateful your kid was sick,” Tanner said. “No, we weren’t grateful for that, but we’re grateful that we were chosen to be her parents and her family because what better people than to fight for her and to fight for the other kids who will be diagnosed.”

“Every day is better than the last because I’m waking up and my kids are alive,” Tim Blackham said.

You can request a kit from dkms.org.

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