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Jason Olson, Deseret News
Lizzie Tenney looks out the window of her home in Highland. The 12-year-old has a rare skin disorder.

Lizzie Tenney got her first bad sunburn when she was just 6 weeks old, during a picnic in the park where her mom kept her in the stroller to shelter her from the sun. The next morning, her red, swollen face and body sent her mom, Kittie Tenney, to the doctor, sobbing. He said Lizzie must be "sensitive" and to slather her with sunscreen.

The 11 years that followed have brought variations on the same theme — tons of sunscreen and long-sleeved shirts, the inevitable severe sunburn, doctors saying be more careful and a search for someone who could explain why it happens.

Last April, Steve and Kittie Tenney, of Highland, finally found that someone in Dr. Cheryl Lee Eberting, a dermatologist who looked at a persistent sore on the girl's nose and another on her cheek and said, "it's skin cancer." Followed a couple of days later by word that Lizzie, now 12, has a rare genetic condition called xeroderma pigmentosum, or XP. Her DNA lacks something that would let it fix damage caused by ultraviolet light, which leads to skin cancer. And unless her family can limit that UV damage, she is likely to die of malignant melanoma or squamous cell carcinoma.

Wednesday, an Alpine business owner and his wife joined the battle to protect the girl from the sun.

James and Providenza Hall and their company, Alpine Custom Window Tinting, spent six hours installing a light film called Llumar on all the windows of the Tenney home. It will screen out 99 percent of the UV rays, and as an added bonus, will help a little with utility bills, Hall said. CP Film, which manufactures it, donated the material. It was all arranged by the California-based Xeroderma Pigmentosum Family Support Group, which was founded four years ago and has since helped more than 20 families with UV protection, education and a special camp where kids with the syndrome swim at night (no sun) and learn they are rare, but not alone.

Another company, Rocky Mountain Tinting, plans to tint the windows of the family car.

The condition is very serious, even deadly, over time. It can cause blindness. Through the support group, the Tenneys met families that had had as many as 700 surgeries to remove skin cancers. Already, Lizzie has had two such surgeries. But if she can limit the UV exposure and damage, life can be full and long, Kittie Tenney said.

The Tenneys have eight children, and it's unusual that among so many, only their baby has the disease, she said. But they're all, Lizzie included, relieved to have a diagnosis and a plan.

The girl is a student at Renaissance Academy, where she's involved in choir and theater. She's in the school play, loves to play with Webkinz and hang out with her best friend and walk the family dog when the sun goes down.

More information is online at www.xpfamilysupport.org. Besides helping families like the Tenneys arrange window film and providing a UV meter, the support group also sends doctors to Guatemala to provide skin cancer removal surgeries, according to Michele Milota.


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