Child of the moon

ORAN, Mo.

For most children, the sun is synonymous with happy times. Maybe spent outside with friends. Swinging at the playground. Swimming at the pool. Even in the bone-chilling days of winter, the sun offers light to roll reluctant snow into a ragtag Frosty.

But that's not what the sun means to 2-year-old Graycen Beardslee.

To her, it's poison.

Earlier this year Graycen was diagnosed with xeroderma pigmentosum, an extremely rare and incurable genetic disorder, also known as XP. For the roughly 200 others nationwide diagnosed with XP -- people who are sometimes called "children of the moon" -- the sunlight's ultraviolet rays are to be avoided at all costs, forcing them to live life largely indoors.

For XP victims, it's a matter of life and death. Though regular lighting from household lamps isn't harmful, even brief exposure to sunlight can cause skin damage leading to life-threatening cancer. Many diagnosed with XP die at an early age, often in their early 20s.

"I think about all the things she's going to miss staying inside," Graycen's mother, Kim Beardslee, said Tuesday from the family's Oran home. "It's tough. She loved going outside. She loved swimming and swinging. Now we stay inside almost all the time."

Since her diagnosis, Graycen has had two surgeries to remove pre-cancerous growths and a plastic surgery on her lip to repair the damage. It's been a trying time for the Beardslee family.

Even Christmas won't be the same this year. The building where a gathering of extended family members will meet has windows that allow in sunlight, so Graycen can't go this year.

"It's the way we live now," Kim Beardslee said.

Now friends and family members are trying to bring a little light into Graycen's life by sponsoring a fund-raising benefit next month to raise money for a special suit that completely shields XP patients from the sun's ultraviolet rays. The benefit will be held Jan. 22 at the New Hamburg Parish Center and will include a variety show, silent auction and food court.

JoAnn Heisserer, one of Graycen's great-aunts and an organizer of the benefit, said the special full-body suit costs about $2,500 and uses material designed by NASA to protect astronauts from harmful rays. Graycen will need a new suit every year as she outgrows the old one. But Heisserer said it will be invaluable to the child.

"Just the idea of going outside would mean a lot to her," Heisserer said. "How can a 2-year-old not go out? She'll never go to Disney World, she'll never hunt Easter eggs, it's just sad. This would allow her to go outside in the daytime at least once in awhile."

Graycen used to love going outdoors, her mother says. She was born a seemingly normal child in August 2002, the daughter of high-school sweethearts who had been married two years. Neither knew at the time that they both were carriers of the recessive XP gene.

Since the XP gene mutation is recessive, both parents must pass along the same mutation for a child to develop the disorder. If only one parent passes on the mutation, the child becomes a carrier -- healthy but able to pass it on.

There were signs of problems early on, but doctors told Graycen's parents she had jaundice and needed to get out and get some sun.

"We had no idea," said Kim Beardslee, a former prison guard who works in security at Associated Electric in New Madrid, Mo. "That's exactly what we shouldn't have been doing."

When Graycen was 6 months old, she began getting freckles. Kim Beardslee called her mother, who said children shouldn't get freckles until they were older.

But both Kim Beardslee and Graycen's father, Eric Beardslee -- who works in construction -- had freckles, so they thought little of it. In fact, when Graycen ha her first birthday, they thought the freckles were so cute they took her to have pictures taken.

But then Kim Beardslee noticed dry skin on Graycen's face. It began to discolor with a reddish tint.

"We got a little worried," she said.

It was the workers at Graycen's day-care center who first suggested XP. Someone there had read an article about children with XP and said it sounded like Graycen.

"It was on Page 88, I'll never forget," said Kim Beardslee, 30. "I read it and thought 'This is her. This is Graycen.'"

One in a million

Their local doctor referred the family to Dr. Susan Mallory in St. Louis. Mallory is a pediatric dermatologist at St. Louis Children's Hospital. She confirmed the diagnosis. Mallory said the disorder is extremely rare. Only about one child in 1 million has XP.

Mallory, who has treated a total of three XP patients, said the disorder can lead to hearing loss, vision trouble and neurological damage. Graycen is still being evaluated to see how severe her XP is.

"But basically XP does not allow the body to repair skin that is damaged by ultraviolet rays," Mallory said. "Our bodies heal from sunburn. Hers doesn't."

The good news is that Graycen can live a long life, Mallory said.

"It can be normal if they really protect their skin," she said. "But Graycen is as fair as you can get, so she has no melanin to protect her. But I think she'll adapt. She's a strong little girl, and she has a great family."

After Graycen was diagnosed in July, were careful to cover her up with long-sleeve shirts, hats, sunglasses and extra-strong sunblock. In August, Graycen developed a fever blister on her lip, which grew to a size larger than a half dollar. Doctors said it was a pre-cancerous growth.

"They said people usually don't get this until they're in their 70s," Kim Beardslee said. "But Graycen got it."

She had surgery to remove the growth and later had plastic surgery to repair the damage. All told, she's had two pre-cancerous growths: the one on her lip and one on her forehead. She's had other growths, including on her nose and her eye.

"She'll get these the rest of her life," Kim Beardslee said.

But her mother says life's not terrible. Graycen gets to play outside after dark. They're hoping to send Graycen to a special XP camp this summer. Camp Sundown allows people with XP and related disorders to enjoy the experience of camp in a UV-protected environment.

They're moving next year into a new house in Blodgett, Mo., about 15 miles away. They hope to modify the new house so Graycen has more room in a protected environment.

"There's no regrets," Kim Beardslee said. "We have Graycen, and it's worth it. It's nothing I'd pick, but there's a whole lot out there that's worse than this."

smoyers@semissourian.com

335-6611, extension 137