He knows that there are some things he simply cannot do. He can’t play football like his 7-year-old big brother, Parker. For Payton, rough-housing like all boys do can lead to painful injuries, trips to the emergency rooms, big needles, bandages and surgeries.
But Payton’s not one to complain, and his parents — Joy and Reid Thornton — have never been willing to accept his rare skin condition as an excuse for not living life to the fullest — pain or no pain.
That’s why Joy and Reid knew something was wrong last year, when Payton was a kindergartner at White Plains Elementary School. Payton was growing increasingly withdrawn, unwilling to talk much about his day at school.
“He’d come home and we knew something was bothering him, but he just wouldn’t talk about it,” Joy says. “We knew he was frustrated, and it was frustrating us … it was just one more thing that this disease was taking away from my child.”
Born with a rare genetic skin disorder called epidermolysis bullosa — “EB” for short — Payton’s body doesn’t produce collagen VII, a protein that allows the top layer of skin to attach to the next. It leaves his skin so thin and delicate that the slightest bump can lead to tearing, or create golf ball-sized blisters that have to be lanced with large needles.
Two years ago, Payton received a stem cell/bone marrow transplant from his now 2-year-old brother, Paxton, in hopes that his body would be able to produce collagen VII on its own, allowing his skin to heal.
The process has been a success, according to the specialists at the University of Minnesota who performed the experimental transplant. But it’s a medical miracle measured in years rather than months or weeks.
Payton’s skin is getting better, but he’s a long way from healed, and his skin will probably never be as resilient or strong as most. While his torso and face have improved dramatically, his arms, which Joy bandages daily, are the worst, showing evidence of a lifetime of scarring and blistering.
“His skin isn’t where we hoped it would be,” Joy says. “But it’s better, so much better than it was.”
A common side effect of EB is the fusion of fingers and toes. Since the transplant, Payton’s fingers had been steadily growing together, making it increasingly difficult for him to hold a crayon, to practice writing the letters in his name or to hold the tiny cups of water his kindergarten teacher passed out at snack time.
“We knew we had to do something,” Joy says. “But it was another surgery … He’s just had so many.”
As with most things, Payton was fearless. He wanted the surgery because he knew it was another step to being like the other kids.
Over spring break, Payton traveled to Cincinnati, Ohio, for “hand release” surgery on his right hand. Steel pins were implanted in the thumb and forefinger to straighten them. Skin from his elbow was grafted onto his hand. Three more pins were placed between his fingers to keep them separated while they healed.
Joy and Reid and Payton thought they were prepared for Payton’s recovery. They were wrong.
“When doctors tell us something is going to be painful, because of the EB and Payton’s threshold, we’re usually not that worried … We know pain,” Joy says. “But when he came out of that hand surgery, I’d never seen him in so much pain. It was scary.”
It took time, but Payton’s fingers have finally healed. He doesn’t have full use of all of his fingers, but he’s making the best of what he’s got.
“He loves writing and vocabulary,” Joy says. “With only two fingers on each hand, he’s got the prettiest handwriting of anybody I’ve ever seen.”
Payton’s first-grade teacher, Aimee Shiftlett, has been amazed at how he is keeping up with the other kids in his class.
“Payton’s handwriting and artistic ability are heads above,” Shiftlett says. “I just wish I could get my other first-graders to work as hard as Payton.”
While kids can be cruel to those who look different, Payton has managed to blend right in.
“The children in the classroom treat Payton just like one of the others,” Shiftlett says. “We have to take turns being Payton’s partner at PE because everyone asks every day. I think having Payton in our school allows our children to really know the day-to-day life of a child with a disability. They love him.”
The more things change
The only constant in the Thornton household is change. Rowdy boys steadily grow up and grow ever more …well … you can imagine what it’s like in a house with three boys.
“We’re always going, going, going,” Joy says.
Parker is playing football. Paxton is in daycare and Payton is a wily first-grader who’s shown interest in learning to play chess.
It’s not just the kids who are dealing with new challenges and surroundings. Their momma is learning some new lessons of her own. Last week, Joy started a new job with a local pharmaceutical company, and is going through the confusion of orientation.
“It’s a complete U-turn from what I’m used to doing,” she says, laughing. “But I’ll get it … eventually.”
After dedicating the past seven years to raising a family and taking care of Payton’s special needs, this is the first full-time job Joy has had since Payton was born. She has worked part-time as a PRN, but her schedule has now managed to get even more hectic.
“It’s going to be a total … well … I don’t exactly know how I’ll handle it,” she says. “But I’ll handle it.”
Joy’s husband, Reid, is still on the mend after a horrendous car wreck last March that left him with two broken legs and a lacerated spleen, among other injuries. Joys says he’s pretty much back to “100 percent Reid.” He has mostly good days, only a few bad days when his back is acting up.
“That’s going to happen when you pretty much break every bone in your body,” Joy says. “He’s going to hurt, but there’s not a lot of sympathy for pain around here.”
Contact Brett Buckner at email@example.com