Father walks 57 miles in 24 hours to raise awareness for son’s rare disease

"Cystinosis never takes a day off. It's a 24 hour compliance it's a 24 hour worry," said Chandler Moore's father Clinton Moore.

Clinton Moore is braving the heat and taking on his biggest challenge yet, walking 57 miles nonstop over the course of 24 hours to raise awareness for his son who suffers from an extremely rare disease.

"My son chandler is the only person living in the state of Delaware with cystinosis and one of only 600 living in the country and one of only about 2,000 to 2,500 in the world," said Moore.

Cystinosis is is a rare, inherited disease, where cystine crystals accumulate and damage every cell in the body. Without specific treatment, children with the disease can develop kidney failure by age 9, and can even go blind.

"It's a genetic metabolic disease it causes a build up of an amino acid called cystine and to keep those numbers at a safe level you have to have consistent 24 your cysteamine therapy. Originally we were told he likely had diabetes but the further testing proved it was way more than that," said Moore.

Now, Moore is working to raise awareness about this rare disease one step at a time while also raising money to find a cure.

"Bringing attention to a rare disease that doesn't get a lot of attention so for me it means everything. Not just for me and my son but for all of the other families as well," said Moore.

And he has a family and community rallying behind him.

"I absolutely love this community this community has stood by me from day one," said Moore.

Moore says he won't stop until a cure is found.

"It's a constant around the clock disease that has to be monitored so cystinosis doesn't stop so neither will we," said Moore.

According to the National Institutes of Health, a disease is rare if it affects less than 200,000 people. Cystinosis impacts more than 600 people alone in the united states.