ATHENS, Texas – Wendy Thomas has grown up with cancer, with sunlight her enemy and nighttime a friend.

The tumors came early. Her first doctor said she wouldn't live to see first grade.

But after 23 years, through Athens High School and now a job caring for the young, she has come to embrace life – and the disease that leaves her vulnerable to ultraviolet light, that keeps assaulting her scarred body.

"I'm blessed to be here," she said during a recent work break. "I don't want nobody to be sorry for me."

For years, the battlegrounds have been her skin and left eye. Now there's the recurring growth near her throat, one Wendy wants to let be. She's been told chemotherapy alone likely wouldn't suffice. Radiation isn't an option because of her disease. Surgery would take her voice-generating larynx.

"Anybody who knows me will tell you I'm not Wendy if I can't talk," she said.

Talk she will, about her family and friends, religious faith and many joys – from fishing and camping to dancing and singing "anything country."

She will talk readily and knowledgeably about the as-yet incurable disease that strikes one in a million people. That has brought her to Dallas doctors and hospitals for years. That has shaped her physical appearance and outlook.

"A lot people think I've been in a fire," she said. "I tell them it's just cancer."

Wendy has xeroderma pigmentosum, a genetic disorder that leaves the body unable to repair the everyday damage of ultraviolet light.

"We were outdoor people. We went camping almost every weekend," said her mother, Jackie Thomas, recalling the early days in the sun.

Wendy inherited the troublesome genes from unknown ancestors and was diagnosed after lesions began appearing on her infant head. At 22 months, the surgeries began. And by age 5, more than 100 tumors had been removed from her skin.

That same year doctors replaced most of her facial skin with skin from her abdomen. That procedure left her with a milky white, disfigured face; others keep blotching her hands and arms, seemingly aged beyond their years. And beyond her skin, four operations have targeted tumors on her left cornea and three have removed growths near her throat.

"Keratosis. Basal cell carcinoma. Squamous cell carcinoma. Melanoma," said Wendy, rattling off her foes. "Try spelling xeroderma pigmentosum," she continued, breezing through the letters.

Fewer than 150 U.S. residents – an estimated 3,000 people worldwide – have the disease, which can cause neurological problems and other disorders and often kills before patients become adults, according to the Xeroderma Pigmentosum Society.

Treatments are few and limited. But with early detection and protection from the sun, "there's no reason" patients "can't live a normal length of life," said Dr. Kenneth Kraemer, a research scientist and XP specialist at the National Cancer Institute.

"I feel wonderful, to be honest with you," said Wendy, whose only medication is daily steroid drops in her cancerous eye. "I don't feel like there's anything wrong."

Once her condition was known, she was kept indoors or covered with clothing, hats, sunglasses and sunscreen if she ventured into daylight.

She still shuns the sun and thrives after dark, a time for gathering with friends, attending church, singing karaoke at local clubs and writing lyrics for songs.

Sitting on her sofa bed last week, she listened to a favorite recording – a local musician singing some lyrics Wendy wrote:

Growing up with cancer wasn't easy

and I've had my ups and downs.

I've had to be strong.

Life has so many expectations

and I know that mine

will all come true...

She has received Medicaid health benefits since 1990. Doctors have also reduced or written off charges over the years, said her mother, a checker at Wal-Mart whose insurance doesn't cover Wendy.

Beyond the persistent medical problems, she and her mother have had other issues to deal with in recent days.

On Feb. 14, they showed up for treatment at Parkland Memorial Hospital's eye clinic, but were told the hospital no longer accepted her Medicaid coverage. "That put a startle in me," Wendy said.

Because she lives in Henderson County southeast of Dallas, Wendy was placed in the state's Medicaid program for rural Texans when she turned 21. But Parkland left the program on Jan. 31, ending care for Wendy and others.

"It kind of aggravates me," she said, detailing how she and her mother were having trouble getting consistent explanations from Parkland and the Texas Health and Human Services Commission, the state's Medicaid manager.

The commission and hospital are preparing to sign a contract that officials say would ensure coverage there for other rural Medicaid patients. And last week, Wendy and her mother resumed their 70-mile drives to Parkland's outpatient clinics.

Away from her doctors and hospitals, she has a job caring for infants at the Methodist Children's Center in Athens. "We have a blast. I wouldn't trade those babies for the world," she said.

Pamela Pruitt, center director, said she has a hard-working, huge-hearted, practical-joking keeper in Wendy, whose appearance can startle some children at first, as it can adults.

"Our children need to know everybody's different," she said. "We all need to be taken out of our comfort zone."

Away from work, she camps and fishes with her father, Ronnie Thomas, now divorced from her mother. She rides horses at night with friends. And she shares time with Larry Melaun, who says his auburn-haired girlfriend calms and comforts him. "She makes me so proud."

They made contact on the MySpace online network and met four months ago at church. Mr. Melaun, 27, a cook and resident of Gun Barrel City, said they have talked of marriage and both want children. "I would love to have a little Wendy," said big Wendy, who isn't ready just yet.

She has her family at Living for the Brand Cowboy Church in Athens, where she has given testimonials about her beliefs, brought worshippers to their feet with her singing and joined the Cowgirls of Faith women's ministry.

"She's an ever-ready girl. She never lets her disease or physical appearance get in the way," said Michelle Carson, ministry founder. "We can all learn from her."

Wendy says she used to go to church "for the wrong reasons," as in "chasing boys." She lived life "the way Wendy wanted to live," as in "drinking almost every weekend, getting drunk."

But at a church service two years ago, "something hit me and said, 'Wendy, it's your turn.' I went down and got saved, and the next Sunday I got baptized."

Now Wendy has a healing perspective: "God made me the way I am for a reason. And he's got a special plan for me."

As for her own plans, they no longer include health care. "I was going to go into nursing, but I'm terrified of needles," she said. "I've been stuck with them too many times."

Then there were the sticks that put tattoos on her left shoulder (the Cowgirls of Faith emblem), right foot (the word "faith" in Chinese) and small of the back (a vintage John Deere tractor).

"I'm a John Deere freak," she said, proudly displaying her art.

Now she's studying criminal justice through an online college and says she would like to attend the police academy in Athens. "I want to be a game warden, but I don't see that happening," she said. "I heard the test is hard."

She has some other wants on her life's bucket list: Audition for American Idol. Take the plunge at an indoor water park. Attend the Xeroderma Pigmentosum Society's camp in New York. "It would be exciting to meet other kids who have what I have."

Topping her list is a chance to stand on the stage at the Grand Ole Opry and "sing my song, anything."

There on her bed last week, surrounded by stuffed bears, gimme caps and pictures of loved ones, she tapped her boot heel and joined in – occasionally wiping a tear – with the recording of her song:

...So this is my life.

I will live it gladly

with hope and praise

This could be the day

The music done, she pronounces the tempo a bit too sluggish.

"I'm more of an upbeat kind of girl."