Graycen Beardslee isn’t like other children her age.
The 5-year-old from Blodgett, Miss., can’t play outside unless it’s nighttime. A rare genetic skin disease causes her to develop severe third-degree burns if any part of her skin is exposed – even for a minute – to any ultraviolet light, the Sikeston Standard Democrat reported Sunday.
Graycen has Xeroderma pigmentosum, which affects less than 1,000 people worldwide.
If Graycen does go outside during the day, she must wear a specially made hood that covers her face, along with clothing that covers her body from head to toe.
“As soon as the sun goes down, we swim,” Graycen’s mother, Kim Beardslee, told the newspaper.
There is no cure for XP and the DNA damage is cumulative and irreversible, according the Xeroderma Pigmentosum Society’s Web site.
Occasionally, Graycen must apply topical chemotherapy treatments to avoid skin cancer. She has already had precancerous growths removed, and will likely have more.
But, it’s the protective clothing that bothers Graycen the most.
“I can’t feel the air, which I don’t like,” she said.