Northeast family raises money for rare disease

A local family is raising funds and awareness for Mitochondrial disease, a rare genetic condition their son Grayson was born with.

A rare condition: Grayson Davis, 5, has Mitochondrial Complex 1 and 4 deficiencies. The condition attacks the mitochondria, which produces the vast majority of the energy for the body. Source: Melissa Davis

Melissa Davis noticed her 5-year-old son, Grayson, would run out of energy at the end of the day. She said if he was active one day, he would have trouble getting off the couch for possibly the next few days in a row.

It wasn’t until May the family found out Grayson had a condition known as Mitochondrial disease. According to the Children’s Hospital of Pennsylvania’s website, one in 4,300 individuals in the United States has a mitochondrial disease, which is genetic. There is no known cure.

“It was nice to finally know what [his condition] is, but it was also heartbreaking to find out the disease doesn’t have a cure and there’s no treatment,” Melissa said.

That hasn’t stopped the family from trying to find a cure. Partnered with CHOP, the family held a fundraiser at the Townsend Room earlier this month, where Melissa said they raised $21,000. They plan to continue hosting benefits, with events tentatively planned in the winter and spring.

They also have an ongoing fundraiser on CHOP’s website, which shows they have raised $47,631, surpassing their goal of $40,000.

Grayson has experienced health issues and has been on a feeding tube since he was 6 weeks old. He was born at a healthy nine pounds, but began losing weight at 1 month old. He has Mitochondrial Complex 1 and 4 deficiencies. The condition attacks the mitochondria, which produces the vast majority of the energy for the body.

“We adapted to that, and there were certain things we had to do, like take extra days off from school and spend a lot of time at CHOP,” Melissa said.

This winter, their goal is to put on a toy drive at CHOP because Grayson spends a significant amount of his time and holidays there.

Grayson has an older brother, Michael, and a little sister, Bianca. Melissa said the whole family has banded together to support him.

“When we found out his diagnosis, the doctor told us to give him the best life possible,” she said. “As family, we’ve rallied around that, like doing day-to-day stuff to make his life easier, to fundraising. We want to give him the best life possible.” ••

Donations can be made at chop.donordrive.com/index.cfm?fuseaction=donordrive.personalCampaign&participantID=65139