Night to become day for El Dorado boy allergic to sunlight

Night will become day on Friday in El Dorado – all for an 11-year-old boy.

Peyton Madden has a rare allergy: he’s allergic to sunlight.

Xeroderma Pigmentosum is more than a nuisance, it’s life-threatening. The condition has kept him from doing many things kids take for granted, such as going to a pool to swim with friends or hanging out with his family in a park.

“His body doesn’t repair anything,” said Sarah, his mother. “All of his sun damages are cumulative – five seconds here, 10 seconds there.”

That’s what makes this Friday special.

As part of a documentary being filmed by the National Organization for Rare Disorders, Peyton – yes, he’s named after the legendary quarterback – will go for a bike ride Friday night.

He doesn’t know it yet, but he’s going to have company: American Legion members on motorcycles are going to join him.

Then firefighters will give him a ride on a fire truck. It won’t be just around the block, though: it will be down to Forest Park for a community party at the El Dorado Municipal Pool.

“At this point, he knows nothing” about what’s going to happen, Sarah Madden said. “Thankfully, we’ve managed to keep it a secret this long.”

The goal is to give Peyton some normal experiences, though his day will begin as the sun sets.

Peyton’s body can’t process sunlight, his mother said, so the rays damage his body. He has to wear pants, a jacket, gloves, hats that include a visor and back flap that covers his neck and lots of sun screen.

Windows at his home and school are heavily tinted to block UV light from getting in, Madden said. Staff at school keep a close eye on him so he doesn’t get into dangerous situations.

He was diagnosed in 2009 when he was 3, his mother said. He developed a cyst on his lower eye lid. That’s not unusual for senior citizens, but it doesn’t happen often in young children.

“It’s not normal for a 3-year-old to have skin cancer,” Madden said.

The cyst grew rapidly and when doctors went to remove it they discovered it went all the way down to the bone. The genetic disease, known as XP, is so rare that it occurs in just 1 in a million people in the U.S. and Europe, according to the National Organization for Rare Disorders.

Madden said she’s been told only 250 people in the U.S. have it.

“It’s a very isolating disease,” Madden said.

Peyton never knew anyone else with XP until he went to a national convention a few years ago. There, he met other children with the disease.

“It gives him a chance to play with kids that go through the exact same thing he goes through,” Madden said.

Friday night will be a chance for him to play with friends in his home town.

“We’re very excited,” his mother said. “It’s a great opportunity for the community to come together and support him.”

Peyton’s story and “Good Morning Peyton” is part of the national organization’s “Do Your Share” awareness campaign, which sheds light on the need for more discussion about rare diseases and for more support from communities. Organizers called Friday night’s festivities “unprecedented” for the organization.

A documentary about the challenges Peyton and his family face is scheduled to debut in October, organizers say.

This story was originally published August 3, 2017 at 8:31 PM with the headline "Night to become day for El Dorado boy allergic to sunlight."