TOPEKA -- Sarah Madden said her son, Peyton’s first bout with skin cancer was on his right eye. The bump grew from the size of a pimple to a marble in three weeks. As a result, his eye was reconstructed but it’s not noticeable. Since then, Peyton had another skin cancer on his nose that was removed and some areas frozen or cut off before they could become skin cancers.
Peyton is currently nine years cancer free, but that doesn’t mean that he won’t get any more. “It’s a matter of when he gets his next one,” Madden said.
Peyton Madden is 12 years old. He lives in El Dorado and has two loving parents, Sarah and Kyle Madden. He is a huge Harry Potter fan; adores his dog and will play outdoors any chance he gets.
However, Peyton can’t simply go outside like any other child. If there’s sunlight outside, he would have to cover up every inch of his skin with protective gear or wait until the sun sets to avoid skin damage.
“Even when it’s 105 degrees in Kansas,” Peyton said he has to wear his jacket, gloves, glasses, and a special homemade UV hat when he wants to go outside. The hat is made of cloth that covers his neck and a UV safe plastic to protect his face, but it’s difficult for Peyton to speak or hear others. One day Peyton will have to start driving and wearing all the gear could pose a safety hazard. As a result, his parents recently proposed a bill to the Kansas Legislature that would protect Peyton and others by amending the Kansas window film legislation to allow tinting on vehicles that do not meet the current requirements.
When Peyton was three years old, he was diagnosed with Xeroderma Pigmentosum (XP) after he developed his first skin cancer. According to the XP Family Support Group website, XP is a rare skin disease that affects males and females, and “it causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation.” Negative effects include blindness and skin cancer. The main treatment for XP is protection from UV exposure. According to the National Organization for Rare Disorders (NORD), XP occurs in one in a million people in the U.S. and Europe. Madden said that it’s an isolating illness.
Fortunately, Peyton receives plenty of support within his El Dorado community. Many places, such as his school or restaurants, are aware of his condition and will shut the blinds before he enters the room. At the Maddens’ church, the minister had the windows tinted so Peyton could walk around safely without wearing his protective gear.
Madden said there is currently no cure for XP, although some places like the National Institutes of Health and the University of Minnesota are doing research. Madden said the worst part is waiting for a cure, but her family is trying to live life to the fullest.
“You don’t want to give up hope, but you want to be realistic at the same time,” Madden said. “We’re not just sitting around in the dark waiting on [a cure].”
Through their involvement with the XP Family Support Group, the Maddens offer their support and raise funds for newly diagnosed families. Peyton also received international attention when NORD covered his experiences for a video that is part of the NORD’s “Do Your Share” movement.
The family is always wanting to talk to anyone to get the word out about XP because they said the cure could come from anywhere.
The Maddens have been working hard at the state level as well. Under current Kansas law, car windshields cannot be properly filmed to make it safe for Peyton. Madden said there is clear window film that can block 99.9% of UV rays without reducing visibility to drivers is now available, but it doesn’t meet the state requirements of visible light transmittance of at least 88 percent. The bill would allow drivers to have a signed statement from a licensed optometrist saying window tinting is necessary to protect their health.
On Feb. 5, Peyton and his parents testified before the House Transportation Committee in support of the bill. Even though Peyton is only 12 now, his parents say it is only a matter of time before he starts driving.
In his testimony, Peyton said, “If you don’t [pass the bill], I will still be able to drive, it’d just be harder for me and I’d have to wear my hat while driving. It would also help a bunch of other people who need it.”
On Feb. 21, the House took final action on the bill and passed it as amended. It was received and introduced by the Senate on that same day. The bill was referred to the Senate Committee on Transportation the following day. It will now be heard by the Committee on Transportation.
Ultimately, Peyton’s parents raised him in a way that he can do anything other kids can do, even if it takes more work. His mother said that he has an amazing disposition and always cares for others first. Peyton has the type of strong personality to endure and withstand XP.
Madden also said that “he’s human like all of us. He has days where he isn’t happy…with what life has brought him and we try to sit down and talk that out.”
For the Maddens, the biggest takeaway from Peyton’s story is that everybody has difficulties in their life.
“You can’t always see the hardships that others are enduring,” said Madden. “There’s a lot to be said about having compassion for other people because you don’t know what they’re struggling with.”
Angel Tran is a University of Kansas senior from Wichita majoring in journalism.