THICK
SKINNED
SKINNED
He was having a good face day, his grandmother said.
A few small blisters and an assortment of red patches dotted his face. He ran his bandaged hand through his blond hair, his exposed left pinkie finger unable to fully bend.
But on Thursday afternoon he wasn’t worried about blisters. Instead, he talked about his love of baseball with his cousin. Just the other day they played a game with tennis balls, which, according to the two boys, fly farther than baseballs. A blister on his left temple formed after a tennis ball struck his head.
He displayed another blister on his right hand. He must have scratched himself in his sleep, he said, and a blister formed overnight.
For most, minor bumps and scratches are forgotten after the initial shock of acquiring them. For Andrew Willett, an 8-year-old entering the third grade at Riverheads Elementary School this fall, such grazes often turn into blisters and sores that take months to heal. He has epidermolysis bullosa, a rare genetic skin disease characterized by fragile skin and recurrent blister formation, according to the Dystrophic Epidermolysis Bullosa Research Association of America.
Andrew’s missing about 30 percent of the skin on his body, covered almost entirely by bandages. Only his head, neck and fingers are exposed.
“It’s hard, but we probably won’t have him for a long time,” said Debby Lilly, Andrew’s grandmother. “He’s OK with that. He’s known –“
“For eight years,” Andrew said.
The disease is categorized by the layer of skin affected, and dystrophic epidermolysis bullosa – the type Andrew has – occurs in a deeper tissue level than other types. A genetic mutation hinders the skin layers from holding together when friction and trauma occur. A blister forms when the skin layers separate, according to the association, which states the disease affects one in 50,000 people in the country.
Andrew spends much of his time at his grandmother’s house, and this week his mother is serving two weeks in the National Guard. While many parents whose children are inflicted with the disease tend to overprotect them, Lilly said Andrew knows of the realities of the disease.
He also makes his own decisions.
On Saturday he will participate in a lawn tractor competition at the annual Weyers Cave lawn party. His eyes widened while he played a videotape of a recent competition where he placed fourth. He and his 9-year-old cousin, Brian Hailey, relayed the day’s events and sized up their competitors.
It’s one of the few places where Andrew is on a level playing ground with the other young people around him, Lilly said.
In other aspects, he’s not like most 8-year-olds.
He was born March 27, 1998, with blisters on his left foot, right hand and right thigh. His big left toe curls under his foot despite a surgical attempt to fix it. After blisters on his tongue healed, the skin attached itself to the bottom lining of his mouth. His twice-weekly baths consist of soap and rarely a washcloth, which may scratch his skin. His bandages cost about $2,000 each month.
At school, he gets along with most of his classmates.
“Some don’t work with me as well as others,” Andrew said. “Others –“
“Love him,” Brian chimed in.
The trio appeared tight knit, finishing each other’s sentences, joking about the boys’ affinity for “Harry Potter” and Lilly falling prey to Andrew’s pinches. Lilly described him as a “positive little fellow” despite the illness.
There is no cure for the disease, and his only treatment is bandages. Since most doctors knew little about EB at the time of his birth, Lilly said she learned how to care for him through trial-and-error and by talking to other parents with EB-inflicted children.
Luckily, he has had only a few complications, Lilly said. With each birthday her grandson celebrates, she’s reminded of a doctor who responded to her questions about feeding the then-infant with: “If you love him, you won’t.” Sometimes she wants to call him to prove he was wrong, Lilly said.
In the backyard, Andrew and Brian mounted their tractors named “Hardly Able” and “Barely Able.”
They revved the engines; the ground rumbled. Saturday will be Andrew’s fifth competition, but for now he reviews tapes of past competitions to learn from his missteps.
“No matter what life hands him, he can face it head on,” Lilly said. “He doesn’t let anything get him down.”