Rare Disease Requires Child To Avoid Direct Sunlight

By: Lily Wu - Email
By: Lily Wu - Email

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Wednesday, March 14, 2012

Five-year-old Peyton Madden was diagnosed with Xeroderma Pigmentosum. It's a rare disease that prevents the body from repairing damage caused by ultraviolet rays.

"It's a one in a million chance of getting it, and there's only 250 in the United States," said Peyton's mom, Sarah.

Two years ago, Peyton was diagnosed with his first skin cancer.

"Three-year-olds don't get skin cancer. When that news came out, it was like, 'How could that possibly be?'' said Peyton's dad, Kyle.

Xeroderma Pigmentosum or XP is an inherited condition that causes kids like Peyton to be extremely sensitive to UV rays from sunlight. Experts once believed if XP was left un-treated and un-protected, XP children would rarely survive until adulthood.

"Twenty years ago when they didn't know anything about XP, yeah, that was the future, because they didn't know how to keep him safe. Nowadays, we're going to do everything we can to give him as normal of a life as possible," said Sarah.

The new normal includes careful planning and a wardrobe that covers Peyton from head-to-toe.

"With Peyton, it's get your clothes on, get your sunscreen on, get your gloves on, get your jacket on, get your glasses on, get your protective hat on," said Kyle.

Another part of their routine is carrying a UV meter that shows them how safe it is for their child. While outdoors, the meter hit above 1,000. The number dropped dramatically to 5 when the meter was next to the tinted window indoors. They said zero is ideal but Peyton can handle anything below a 5 without his protective gear.

Although the disease affects a small number of people, the family offers one piece of advice to those not affected by XP.

"Sunscreen seems like such a small thing but down the road, it could make the difference, even when their child is an adult," said Sarah.

The national daytime talk show, Anderson, will air a special report on XP on Thursday at 3 p.m.

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