Dad plans 100-mile run to raise awareness for daughter’s rare condition

Updated: May. 30, 2019 at 3:36 PM EDT
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CHESTERFIELD, Va. (WWBT) - A Chesterfield girl is only one of a few in the whole world with a rare genetic condition. In fact, she’s the only one with her specific condition.

Now, her dad is running 100 miles to try to raise awareness.

“Beautiful and joyful and we just love her so much,” said Casey Baum of his daughter, Clara.

Clara was born with a genetic mutation effecting her STXBP1 gene. It’s a condition so rare that there aren’t a lot of doctors familiar with it and there just isn’t that much research, either.

The condition causes her proteins to not develop properly, and her neurotransmitters don’t fire properly.

“(She has a) lifelong intellectual disability,” said Baum.

She is non-verbal and also has physical disabilities.

“She does a lot of hard work with physical therapy," said Baum. "A lot of hard work with occupational therapy. It’s going to be a hard life with Clara; it’s not going to be an easy life.”

Her parents are making sure she knows she’s tough and that she can do hard things.

They’re teaching her that with action.

“A 100-mile race is certainly one of those things that appears to be a big challenge,” said Baum, who is planning to run 100 miles in 30 hours.

“50% of the people that run the Leadville 100 don’t finish the race, so it’s a big challenge for me,” he said.

The training is grueling. He hopes with each tough step, people pay attention and consider donating to their fundraising efforts to support research.

But his inspiration, is right here with Clara.

“With Clara, I said she is going to be a professional inspiration," said Baum. "So, that’s kind of her career path.”

Clara’s dad, Casey, has a goal of raising $50,000 to support research of all rare genetic disorders. To read more about this family’s journey or to donate, click here.

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