Ohio boy with rare disorder fights for needed treatment

Chase Holt, 7, is battling a rare genetic disorder.

PAYNE, Ohio (WANE) – Chase Holt is like most seven-year-olds. He likes to play sports and video games and loves wrestling. But, he’s already had to endure more than many adults. In April 2013, Chase was diagnosed with Neurofibromatosis Type 2 (NF2). It’s a rare genetic disorder that causes benign tumors to grow in different places in the body.

Chase’s tumors on his spine caused his left arm to be paralyzed. But, he didn’t let that stop him from playing sports like baseball and golf.

Photo Courtesy Chris Holt
Photo Courtesy Chris Holt

“It’s amazing to see him be so driven to do something that he figures out a way to do it, but it’s also heart wrenching that he had to figure out a way to do it,” Megan Holt, Chase’s mom, said.

Normally, there’s no cure for NF2. But, Chase’s tumors aren’t the typical NF2 tumors and doctors think a medicine usually indicated for leukemia could stop the tumors from growing. But, because the drug isn’t the usual treatment for NF2, the Holt’s insurance won’t cover it.

Now doctors are recommending the Holts self-fund a six-month trial to prove to the insurance company that the medicine will work. That trial will cost $40,000.

The community’s already raised almost half of that, but Chase can’t start the trial until all of it is funded. Click here for more on how to help Chase.

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