About one in a million people are hypersensitive to the sun. Peyton Madden of El Dorado, Kansas, is one of them. But thanks to a loving family and community, living with a rare diseasedoesnt feel so lonely.
ALL PEYTON MADDEN KNEW was that the National Organization for Rare Disorders (NORD) was making a documentary. They had come to El Dorado with a film crew the day before and asked him questions about xeroderma pigmentosum (XP) and how he couldn’t let sunlight touch his skin. Eleven years old and new to media, he thoughtfully answered every question, then pulled his mom aside during a break and whispered in surprise, “They’re really interested in me!”
That Friday evening, though, Peyton thought they were just filming him on a bike ride with friends. Even when the American Legion guys pulled up as a sort of motorcycle escort, he figured it was “just a weird motorcycle thing”—and the crowd was for someone else’s pool party.
He’d only been to the municipal pool once, wearing protective gear because he can’t risk damage from ultraviolet light. Most bodies can repair mild damage in a few hours; for Peyton, that damage is permanent and cumulative, making nonmelanoma skin cancer 10,000 times as likely and sharply increasing his risk of vision impairment and neurological problems.
Peyton pedaled a little farther with his friends, who were near bursting with the secret. And then the crowd surrounded him, and cheers erupted, and he saw the giant “Good Morning, Peyton!” sign, and it all sank in.
Bu hikaye Real Simple dergisinin October 2018 sayısından alınmıştır.
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Bu hikaye Real Simple dergisinin October 2018 sayısından alınmıştır.
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