BRYON SPARKS' HANDS — disfigured, shiny with scar tissue and curled into useless clubs -- speak louder than his words.
The 17-year-old, who suffers from a rare skin disease, doesn't have to say he's well-acquainted with the age-old question of why God allows evil.
One glance at Sparks and you know he's wondered why he was born, even before he explains the details of Epidermolysis Dystrophuca Recessive.
His growth extremely stunted, the young man looks much younger than 17. He recently lost many of his teeth. His wounds, blistering sores all over his body, must be bandaged several times daily.
His parents recall his asking, as a youngster, "Why is my body so ugly?" and, "Why does my little sister have fingers and I don't?"
Buthis certainty in the goodness of God is unflagging, says Bryon, who with his Church of God evangelist parents is speaking today and tomorrow at the Pasadena Church of God.
"God let me have this disease to show others the way," he says. "No matter what your problems are, God has a plan. No matter what happens, he's there."
The teen-ager travels around the country from his Ohio home with his parents, Stephen and Lillian Sparks, both ordained Church of God ministers, and histhree younger siblings, Leann, Jenell and Brent.
As a youngster, he taught himself to do his schoolwork by clamping a pencil between his wrists. He excels scholastically and considers starting a computerbusiness someday. Last month, he learned to drive the family van.
The Sparks call Bryon's very existence a miracle. Most children withthis disease are institutionalized because their families can't dealwith the horror of the illness; most die as babies.
Bryon lost 80percent of his skin at birth from the genetic disease, which is incurable. Because his system produces too much of an enzyme that breaks down the "glue" that holds skin together, his skin blisters and peelsat the slightest touch.
As a toddler, he couldn't crawl or climb because his skin would peel off. The scar tissue from the sores fusedhis fingers and toes, and though years of painful and expensive operations in Europe opened his fingers, they were unusable and grew backtogether.
Despite the time and heartache involved in having a child with such a disease, the Sparks call Byron a gift from God.
"We've learned wonderful lessons from Bryon's life," says his father. "He's got a song that comes from his heart. The song that God gives is not based on circumstances."
Skeptics about faith are forced to deal with the reality of God that Bryon and his parents insist they experience. "People do tend to listen because they know we aren't being flippant," says Stephen Sparks.
The difficulties have also made the family very close, and Bryon's brother and sisters also benefit from his pain, says Leann, 13. She hopes to become a medical missionary overseas. Her younger sister wants to work with the deaf and blind, to "be someone's eyes," she says. The youngest boy would like to be a minister.
Lillian Sparks, a sought-after speaker in the Assembliesof God who has written two books about the family's struggles, adds an other benefit from her son's illness: valuing life.
"You adjustyour priorities. You don't want to waste the time God has given you," she says.
But despite their staunch words, the Sparks don't gloss over the reality of trouble.
"Life is not fair," says Stephen Sparks. "You cannot choose to have a healthy child or an unhealthy child. Of course we have questioned the goodness of God. But we believe God can cause all things to work for good. It doesn't say everything that happens to us is good, but that God can bring good. You can curseGod, or trust God. We have chosen to trust."
It is difficult to thank God when everything has gone wrong, says his wife. "But that's when it counts. That's when your faith in Christianity and God is real."
She quotes a passage from the Psalms in which King David says he chooses to praise God at all times.
"We choose, too. Our faith has been stretched, and that's painful. But we are what we are becauseof Bryon's life."
The teen-ager's life has been improved by visits to a clinic in Germany, where doctors are researching the disease.
At the clinic, the Sparks learned about a special diet and vitaminsupplement that would make their son physically more stable. They also learned about a system of bandaging his wounds every four hours, as opposed to the American treatment of bandaging every few days, Mrs.Sparks says.
"It's miraculous. He used to be wrapped from neck tofeet; now he can wear shoes and play sports," she explains.
Still, all the treatment cannot alleviate the many mornings Bryon wakes upin blood-soaked pajamas.
"He knows God could heal him -- but he also knows the day will come when God will heal him, when God will give him a new body," says his father. "Faith is believing what you don't see. You can't take that from him."
The Sparks will speak at services at the church on Tick Neck Road tonight and tomorrow night at 7p.m.