BY MARY KAY SWEIKAR
DANVILLE — Thomas Clark of Danville is a well-adjusted 12-year-old boy who enjoys video games, talking with his friends, and trying out the new Wii games that he got for Christmas.
But Thomas has been coping with a health problem since birth that has required his family to make some major adjustments in their lives.
He has epidermolysis bullosa (EB) — a rare genetic disease characterized by the presence of extremely fragile skin. In people born with EB, their two skin layers lack the anchors that hold them together, and any action that creates friction between the layers, such as rubbing or pressure, will create blisters and painful sores.
Thomas’ parents, Brenda and Chris Clark, also have a 9-year-old daughter, Cathy, who is disease-free. Both parents learned that they carry the recessive gene for EB and their children have a 25 percent chance of having the disease at birth.
“We didn’t want Thomas to be an only child,” Brenda said, “so I got pregnant again, even though there was a small risk that our second child would also have EB. Now we’re so happy that we went ahead and had Cathy.”
Thomas is in seventh grade at St. Paul’s School in Danville. He has lots of friends he’s been with since kindergarten who are accepting of his skin condition. He can’t participate in regular sports because just a minor fall or bump could tear his fragile skin. He also is cautious when he goes out on the playground for recess.
Thomas fits in well with his peers at school.
“I like school because I can visit with my friends,” Thomas said. “It’s too bad that all the school work has to ruin it.”
“Thomas has been such a joy,” Brenda said. “He was always a healthy and happy baby in every other way, except for his EB.” Even though she had ultrasound imaging while Thomas was still in the womb, his rare skin disease was never detected by doctors.
Brenda was 10 days overdue with Thomas, and he weighed in at a healthy 8 pounds, 12 ounces. “When the nurses cleaned him up after birth and the skin on his back peeled off, they knew that something was terribly wrong,” Brenda said.
Thomas was immediately airlifted to the children’s hospital at St. Francis Medical Center in Peoria, and then was transferred to Children’s Memorial Hospital in Chicago.
“The doctors wanted to insert a gastrointestinal tube and feed him that way,” Brenda said, “because sucking on the nipple of the bottle was making his skin raw.”
Also, children with EB need more protein because so many of the nutrients obtained from their food are used up in building a new layer of skin. But after five days in the hospital, Brenda and Chris took their infant son home — without the benefit of a feeding tube.
“It was pretty scary for us at the time,” Brenda said, “but we had a lot of family support, and our Catholic faith kept us going.” Today Thomas is small for his age, weighing only 53 pounds.
“He’s a picky eater,” Brenda said. “And it’s difficult for him to swallow certain things because his esophagus is narrowed.”
It’s a nightly ritual for Thomas’ dad, Chris, to wrap the boy’s hands, forearms and knees, which are his most vulnerable areas of the body for skin breakdowns. Occasionally Thomas gets a corneal abrasion in one or both eyes, and he is literally blinded for several days. Any area that has a skin breakdown itches intolerably during the healing process.
“When he gets an eye problem we try to lighten things up by calling him ‘one-eyed jack’ or ‘two-eyed jack,’” Brenda said. “He’s learned to cope with all of this very well.”
The physician specialists who care for Thomas are all affiliated with St. Louis Children’s Hospital. Every year the boy has surgery on one of his hands to correct the webbing of his fingers and other deformities that his skin problem causes, within a matter of months. He goes to physical therapy once a week, but goes more frequently whenever he undergoes another hand surgery.
Remarkably, Thomas can write and draw beautifully. “He has a real talent for drawing very detailed pictures,” Brenda said. “In fact, he drew an elaborate scene for our family Christmas card this year.”
Thomas spends a lot of time on the computer with his video games. “I’d like to become a graphic artist,” he said confidently. He’s also interested in producing computer video games someday.
Thomas feels that he can live with his EB and does not want a bone marrow transplant or any other procedure that could offer a possible cure. However, Thomas is well aware that he is very susceptible to a certain kind of skin cancer that may show up in his 20s or 30s.
“If get the cancer, then I’ll consider the bone marrow transplant, since I’d have to get chemotherapy anyway,” he said.
“We just arrange our schedules around Thomas,” Brenda said.
She works four days a week as an adoption specialist at the Department of Children and Family Services in Danville — a job she’s held for 15 years.
“This way I have three free days in a row in case we have to take Thomas to St. Louis,” Brenda said.
Chris is a video editor at Human Kinetics in Champaign.
The family still takes vacations, but they go to Disney World and Myrtle Beach during the spring and fall, when the temperatures are cooler and Thomas can better tolerate the sun.
The Wii game has worked out well for both Thomas and his younger sister, Cathy. “This way Thomas can bowl, golf and enjoy other sports that he can’t do in real life,” Chris said.
Cathy is an active third-grader at St. Paul’s, where she is also a cheerleader for the Saints football team. She also takes jazz dancing and acrobatic lessons and is in the Brownies.
“Thomas and Cathy get along like normal siblings,” Brenda said. “His condition is well accepted by all of us, including Thomas himself.”
Brenda and Chris both grew up in Danville and graduated from Schlarman High School. “But we didn’t meet until much later, when Chris was playing drums in a band here in town,” Brenda said.
The couple married in 1989 and waited seven years before they had Thomas.
“We feel fortunate because Thomas’ condition could be so much worse,” Chris said. “When we visit the children’s hospital in St. Louis we see kids with his condition who are bandaged from head to foot and are on a feeding tube.
“Everybody has to make some adjustments in their lives,” he added. “It’s no big deal.”
