Community Stays up Late with Rare Disease ‘Moon Child’

Residents of a small Kansas town united together to post fliers and posters, all to raise awareness about a boy with rare disease.
Eleven-year-old Peyton suffers from Xeroderma Pigmentosum (XP). This is a rare genetic disorder where the body is unable to fix damage done to the skin due to ultraviolet light. Sometimes, exposure to sunlight is completely forbidden, which brought about the nickname “moon children.”

According to the National Institute of Health, children with XP experience the most common affects on the eyes and the nervous system. In addition, 30% of people with XP develop progressive neurological abnormalities.

Peyton’s daytime activities are limited. If he does spend time in the sun, this “moon child” has to wear protection and not expose an inch of his skin.

The National Organization for Rare Disorders (NORD) just released a documentary called “Good Morning Peyton” that sheds light on the rare disease and gives us a slice of Peyton’s life. The documentary shows us how the organization came together to ensure Peyton got a taste of normal life, by switching daytime activities to night and allowing Peyton to interact with his friends under the moon-lit sky.

You could watch “Good morning Peyton” here. In it, his parents talk about the magic hour right before the sun dips, where they are able to go outside and experience the last rays of the sun in purple twilight.

As part of NORD’s year-long Do Your Thing movement, filmmaker Alison Klayman of Washington Square Films, made the film and captured the nighttime activities, playing with the glow of lanterns and glow in the dark balloons. The campaign aims to inspire people to show love and support for those affected by rare diseases or conditions

“There are a lot of things that happen in El Dorado that happen during the day, like playing outside and going to the pool, that Peyton doesn’t always get to enjoy as much as the rest of us,” said the town’s mayor Vince Haines in the film. “Tonight is special because we’re turning nighttime into day – just for you. So, good morning, Peyton!”

Over 400 people stayed up late to come out and play with Peyton. They painted the night with glowing things and all got to know this boy a lot better. In that one epic night, Peyton never felt more alive.

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