Every day for school, or every day during the summer, when Peyton Madden goes outside, he has a process to go through first.
He’s already wearing jeans virtually all the time. He puts on a slick jacket that covers his upper body effectively. He put on gloves. He’ll wear shades. Then he places a big hat that has a specialized clear plastic visor in the front and drapes over his neck in the back. Even with all that, he still applies strong sunscreen on his skin.
After all, no part of his skin can be left exposed to the sunlight.
Why? Because Peyton—who is 11 years old and lives with his parents Kyle and Sarah, and his sister Rylee, who is 14—lives with an extremely rare and life-threatening allergy to sunlight called Xeroderma Pigmentosum (XP), which highly restricts his ability to engage in typical daytime activities without extreme head-to-toe coverage, and with summer temperatures upwards of 105 degrees, he easily can overheat. Maybe 250 kids in the entire United States suffer from this condition, it’s that rare.
For Kyle and Sarah, it was a struggle to cope with their kid in this condition early in his life. Peyton was 3 years old when he was first diagnosed with XP, and by that point, he already had skin cancer removed twice because no one knew he needed extreme protection from the sun. He also had his right eye reconstructed because of an invasive squamous cell that reached part of his bone.
“You kind of go through a grieving period like you would anything. It’s a different life that you didn’t plan,” Sarah said. “…You mostly become immune to it, but then every once in a while, it grabs you.”
“We’ve been dealing with this for so long that it’s become a normal way of life,” Kyle said. “…We have good days and bad days. On bad days, you get questions from people who don’t know, or you get a stare or a snide comment.”
Since his diagnosis, they’ve always made sure every window in the house is tinted with UV protection. They use only incandescent light bulbs, too.
“We have enough incandescent light bulbs for the next decade,” she said with a laugh.
She also said they need to give him extra Vitamin D. A normal amount is 400 to 600 IU per day, but he takes specialized drops and needs about 3,000 IU per day.
His mother also designed hats that are more fun. He has different hats for different seasons including a Fourth of July hat, a hat with the Star Wars character BB-8 as well as other themed hats. When he’s safely indoors, he’ll take off his hat, then hold it open to put his gloves and jacket in there. There’s a velcro latch that helps turn his hat into a nice carrying sack.
Throughout his life, Peyton has received more and more support from his friends as he’s gotten older. It can be scary to go to school and have someone try to take off his hat, but he’s grown up with enough of the same kids that they are sensitive to his situation.
“When I was in preschool with the first friend I ever made, the windows were open—not just the blinds, but the actual windows—I was walking in, and to protect me, he just pushed me out of the room,” Peyton said.
Kyle said that schools have worked well with him. Peyton attends Oil Hill Elementary. The teachers there will keep an eye on him and contact his parents if they noticed any potentially risky situations during the day.
“On my first day of kindergarten, the principal announced it to the entire school,” Peyton said.
Everyday life outside of school can be challenging, too. Eating out can be tricky because of all the windows at restaurants, so Peyton likes to go to the Subway inside Wal-Mart a lot. Pizza Hut tends to close the blinds, making it an easier choice, as well.
Peyton definitely can’t go swimming outside, but he can go to the YMCA to swim there. He’s been fortunate enough to go to the city pool a couple times when they had events at night. Even for those, though, his parents had to double check the light situation to make sure it was safe.
“We try to not let it limit what he can do,” Sarah said. “It takes a lot more planning, but he’s gone on a cruise and he’s hiked in Yellowstone. You just got to pack twice as much stuff as you normally would. Like every little kid, he wants to wear shorts, but he has to do that in hotels.”
He still does a lot of typical activities for a kid his age. He’ll watch TV. He has a Nintendo Wii. He’s been to the bowling alley and the library. At night, he can ride his bike.
He once went to a ball game, and he was talking to another kid his age, but the other kid couldn’t understand him, so he took off Peyton’s protective hat to hear him better.
“I was talking to somebody else, and I looked down just for a second like any parent would,” Kyle said, “but I had to do a double take and realized he didn’t have his hat on.”
Sun damage is cumulative, so even exposure for as little as five seconds can manifest in horrific ways later on, including cancer in the worst-case scenario.
His big sister Rylee is very protective of him, too.
“We were in a taxi one time, and the windows were actually safe,” Sarah explained. “But when we stopped, the taxi driver got out so quickly and opened Peyton’s door. So she like tackled him, then covered up Peyton.”
“He probably thought I was crazy,” Rylee said about the cab driver, who was just opening the doors like they’re supposed to for their customers.
Another time, Rylee noticed there was a hole in Peyton’s jeans while they were outside. So she had to be creative and improvise.
“I took my shoe off and untied my shoe lace and tied a sock around his knee,” Rylee said. “I’m pretty sure it looked like we were just in a car accident because I had one shoe off and he had a makeshift band-aid.”
Indeed, no caution is too much. His parents take him to Kansas City every three months to have a pediatric dermatologist examine him.
During the summers when he was younger, his parents let him stay up later than most kids probably were allowed to. They’d have late-night water balloon fights and run around with no one else out. Now that he’s getting older, his friends sometimes can play with him outside later in the evenings too. Kyle, a teacher at Bluestem High School, can dedicate a lot of time during the summer to making sure he’s protected.
“If it’s something we’ve done or he’s done, we’re usually a little more lenient,” Kyle said. “If it’s a new situation, we want to be cautious.”
Peyton is venturing out to a brand new place called Camp Discovery in Texas this Saturday. More than 80 kids from around the country who have dermatology conditions also are attending this camp, which is staffed specifically to help kids with medical conditions. It’ll be the first time he’ll be on his own without other family members around. His grandmother will drive him there, because they don’t want him to fly alone.
The Maddens travel to a medical conference every two years that is open for all those who deal with this issue. Sarah said it’s been helpful to cultivate a supportive group of friends whom she can call at any time.
Night Into Day
The National Organization for Rare Disorders (NORD) has put together an event Friday night at Forest Park for the community to help turn night into day. NORD looked for a child with XP in a smaller town, which is more conducive to the community giving its support.
“It’s about rallying the town around Peyton and making a difference in the life of a child with a rare disease,” Sarah said.
She was honored that he was chosen for the event, which will be a complete surprise for Peyton, who thinks he’s merely going to be featured in a documentary.
“‘I’m excited to see Peyton’s reaction,” she said.
He’s going to ride his bike as he’s leaving the neighborhood, and the American Legion will be riding with him as well as a fire truck. There’s even going to be a glow-in-the-dark nerf gun war.
Sarah hopes events like this will raise awareness to diseases and conditions like XP. There isn’t a lot of funding for the research outside of a couple locations in Florida and Washington, and there currently is no cure for XP.