Local family working with CHOP to find cure for son's rare disease

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Local family working with CHOP to find cure for son's rare disease: Ali Gorman reports during Action News at 5pm on October 2, 2018.

A local family is working with researchers at the Children's Hospital, hoping to find a cure for their son and other kids battling a rare disease.

It's a complex condition known as Mitochondrial Disease. It is rare, but the research has the potential to have an impact on everyone.

Doctors say there's hope for families affected by the disease and the families are the ones making that possible.

Playing with his dinosaurs and his little sister Bianca in the morning, Grayson Davis appears to be like any other 5-year-old. But his parents say he's been battling multiple medical problems, starting when he was just 6 weeks old.

"He was labeled failure to thrive, he wasnt growing, he wasnt putting on weight," said Grayson's mom, Melissa Davis.

He spent months in the hospital and now relies on a feeding tube for nutrition. Grayson has a type of Mitochondrial Disease that zaps his energy by the end of the day.

"Just complete weakness where his little legs cant carry his body anymore," said Melissa.

Dr. Marni Falk at the Children's Hospital of Philadelphia explains mitochondria are like your batteries, they produce energy. If they're not working properly, it can affect several organs, symptoms range from mild to severe.

"So, vision loss, hearing loss, strokes, seizures, neuropathy, heart problems, kidney problems, liver problems..." said Dr. Falk.

But she says they're making progress in their research. Before 2016, there were no clinical trials; Now they're rolling out their fifth. It's thanks to families like the Davises who have started fundraising.

"So they inspire us and they partner with us and its really moving the needle much faster and much further," said Grayson's dad, Mike Davis.

The Davises say every dollar raised goes directly to researchers at CHOP, hoping it will help their son and other kids affected.

"That someday there is a cure or a better way to live with it," said Melissa.

And why this could have a greater impact is because we all have mitochondria and it's responsible for our energy. Helping find out how to treat the disease might also tap into ways we can boost our own energy or slow the effects of aging.

Grayson's family is holding a benefit on October 13th at the Townsend Room, which is located at 12273 Townsend Road in Philadelphia. The event includes beer, wine and a buffet and is from 7pm until 11pm.

All the money goes directly to the Children's Hospital.

And for more information on CHOP's program, CLICK HERE.

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