Jackie Thomas desperately wishes someone could tell her how to cope with the rare disease that forces her 4-year-old daughter to live life away from sunlight, her facial skin to be replaced by surgery.
Every time Wendy Thomas goes outside, she must wear a large sunbonnet and special sunglasses that protect her delicate eyes. If she doesn't, she runs the risk of developing more of the skin cancers that already have marred her ever-smiling face and threaten her life.Unless it is night, she must travel only in her family's van, which is equipped with window blinds and tints. Even in the house, she must be careful to play on the side away from what rays get past the blinds and shades, and she must be covered every day with the most powerful sun blocker manufactured.
As Wendy prepared to undergo more surgery Thursday in Dallas, her 32-year-old mother said she can only wish there was a support group in Texas for mothers of children with xeroderma pigmentosum. She would even start one if she could find someone to join.
"I wish somebody could tell me what Wendy is going to go through, especially in the last and final stages," she said. "But I can't find anybody."
Only a couple hundred Americans have the usually fatal disease. The odds of having XP, as the affliction is known, are literally one-in-a-million, says its foremost expert, Dr. Kenneth Kraemer, a research scientist at the National Cancer Institute in Bethesda, Md.
Those with XP must be constantly protected from sunlight, otherwise their skin and eyes may be severely damaged.
But the real risk for Wendy comes from the numerous skin cancers that form on XP patients, some of which could prove fatal if not treated in time. Also, about 20 percent of XP patients have nerve-related problems and may develop deafness, muscular disorders or retardation.
Wendy has had so many skin cancers removed from her fair, freckled skin during seven previous surgeries that her parents have agreed to allow a plastic surgeon to replace all the skin on her face.
At present, her face is scar-covered and her scalp is hairless in several patches. The girl's parents say they know the extensive skin grafting is risky, but say it is her only chance for a fresh start - and survival. Otherwise, she faces a risk of melanoma, the most severe form of skin cancer.
The surgeon, Dr. H. Steve Byrd, would rather not talk about how risky the surgery is, his secretary said.
The difficult and painful surgery will take place at Dallas' Baylor University Medical Center, where Wendy will have an extender inserted into her abdomen so skin can be stretched and later removed to be grafted onto her face, Mrs. Thomas said.
"I wish she was old enough to make some of these decisions on her own," Mrs. Thomas said. "She's gone through so much pain already."
Some of the pain isn't merely physical, and that is just becoming evident to the child.
Even in Athens, where several fund-raisers have been held to help the Thomases with medical bills, some women will pull their children away from Wendy, fearful her disease may be contagious, said Mrs. Thomas, who lost her a factory job recently and whose husband is a farmer.
It is not, said Kraemer, who has produced the only laymen's guide to the disease. And a lucky few, who were diagnosed early in life, have lived relatively normal lives, he said.
Mrs. Thomas said she can only sit and wonder how effective previous surgeries have been in removing all the skin cancers.
"Quite frankly, for a long time, I'd just sit in my house and cry," she said. "I used to blame myself for Wendy's problems. I used to love sitting out in the sun and Wendy would always be with me."