Girl, 3, has rare disorder: 'The sun hurts my skin'

Girl, 3, has rare disorder: 'The sun hurts my skin' »Play Video
Alexis James
OLYMPIA, Wash. -- When the sun shines, many love to be outside -- unless you are 3-year-old Alexis James, who has a rare condition that can't handle sunlight.

At her house, a sliver of sunlight peeks through tinted windows and shines on Alexis, who spends bright days indoors in the dark.

"The sun hurts my skin," she said.

Alexis is one of just 200 people in the United States who suffers a rare genetic disorder called xeroderma pigmentosum. The child's genes can't repair damage from UV rays.

"I thought I was going to the dermatologist for steroid cream for her eczema," said Melanie James, Alexis' mom. "And they told me she had pre-cancerous spots and she's not even three years old."

So Alexis jumps and bikes inside the house and usually waits until dark to don a headlamp to play outdoors.

She's had skin cancer five times and 10 biopsies. It's not an easy life.

"Hard, I just want her to have a normal childhood," said her dad, Erich James.

Spots on the child's fragile face aren't freckles like her parents first thought, they're age spots.

"She has the skin of a 40-year-old," Erich James said.

Mom and Dad lather Alexis in SPF 50 every two hours, even inside. They use a UV meter to measure the safety of settings and dress her in a moon suit to keep rays away.

"Not even a fully cloudy day is safe for my daughter to be outside without her protective gear," Erich James said.

Erich always dreamed of having a family the size of a softball team until learning the 1-in-4 odds that another child could suffer the same disorder. So the daughter whose brought sunshine into their lives will likely remain an only child.