Teen battling rare disease looks forward to high school
NEWMAN – Like his classmates, Garrett Spaulding is looking forward to high school.
He anticipates the day when he can drive, has his own Facebook page and texts on his cell phone……all traits typical of a teen leaving middle school behind and making the transition into high school.
But even as he pursues typical teen activities to the greatest degree possible, Garrett lives each day with Epidermolysis Bullosa (EB), a genetic disease which causes his fragile skin to easily blister, creating painful wounds similar to burns.
Garrett was among the eighth-grade class at Yolo Middle School this year, and joined his classmates in the promotion ceremony celebrating the transition to high school.
It was a milestone for the 15-year-old, whose educational journey through local schools has been made possible by one-on-one aide Terri Eddington and an accommodating school district.
“(Terri) has been with him from the start,” said Garrett’s mother Lorraine Spaulding. “She has been an absolute Godsend. I could not do this without her.”
Eddington will continue with Garrett to high school, where Garrett will be back in school with his older brother David, who will be a junior.
The middle school graduation was a special moment for a young man battling a rare genetic disease.
Garrett had hoped to walk the final few steps to accept his diploma, Spaulding related, but decided not to after discovering that his gown had been produced in a special wheelchair cut.
His battle against EB and the complications it brings now includes a physical therapy regimen designed to allow Garrett to walk again.
“We’re hoping that by the beginning of next year he will be able to walk, at least with a cane,” Spaulding expressed. “He works so hard at it, to the point where he is bleeding.”
The physical therapy followed foot surgery last July.
Garrett, who had used a wheelchair off and on through his fifth-grade year, had developed complications at a feeding tube site which confined him almost completely during the two years leading up to the surgery, Spaulding said.
That extended period in a wheelchair caused Garrett’s legs to atrophy and led to foot problems, she explained, and the foot surgery led to nerve damage.
That episode, Spaulding said, exemplifies how the skin disease sends ripple effects through the body and its systems.
“It was just a vicious circle. You think you can solve one problem, but it is hard to do that without creating another,” she reflected.
EB is a disease which affects the connective tissue of the skin layers. If healthy skin was like Velcro, Spaulding has said in describing the disease, the skin of EB patients such as Garrett lacks the “hook” which fastens the layers together.
“He is one of the most severe EB kids out there,” Spaulding reflected, “but he is such a fighter.”
Garrett’s body is wrapped in bandages, which are changed three times a week.
With his feeding tube removed, his challenges also include eating enough to sustain himself. Because the skin in his mouth is so frail, he can tolerate only soft foods.
But the complications of the feeding tube were so severe, Garrett said, “I would never go back to that.”
EB is a progressive disease, Spaulding said, and she estimates that wounds now cover 70-80 percent of Garrett’s body.
“On top of the skin issues, there are so many internal issues that he deals with,” she related.
As challenging as each day is, Garrett also finds time for typical teen pursuits and lives life to the fullest. In addition to texting and Facebooking, he races R/C cars as a hobby and closely follows basketball – particularly his beloved Boston Celtics.
“He tries to find a balance” between enjoying his interests and activities and dealing with EB, Spaulding said. “He’s pretty good at it.”
He is also eager to drive. “We’re talking a lot about that,” Spaulding said. “He wants to get out there and drive, so we are going to have to figure out how that is going to work.”
He has done well in school, despite missing many days due to medical appointments.
“Garrett likes school work. This is the first year he has struggled a little,” Spaulding reflected. “The school system has been awesome. They have gone above and beyond what I anticipated from them.”
Spaulding said she initially was concerned with how Garrett’s fellow students would accept him.
But, she said, “the kids in this community know Garrett and they love him. He never gets any flack from anybody.”
That reflects the support of the community as a whole, Spaulding added.
“I hear horror stories (from EB families in other areas),” she commented. “We have very loving, supportive communities here, and everybody treats us well.”
EB, she said, is a relentless disease that makes every day a challenge, particularly as it has progressed.
“Management of the disease (has become) more complicated and more involved. His life is exhausting. Sometimes it is hard just to make it through the day,” Spaulding reflected. “You never, ever get a break.”
Spaulding now works as a clinical care coordinator in the Stanford Pediatric Dermatology Department, and has been involved in helping develop guidelines and protocols to help other families with EB children cope and manage the disease.
Once a year, Garrett spends a day talking with medical students at Stanford about his disease, sharing insight and raising awareness.
While the techniques used to bandage and care for those afflicted with EB have evolved greatly in the past 15 years, Spaulding said, there is no cure for the progressive disease.
She follows the research closely, and holds out hope that a cure is close at hand.
“They are working very hard to try to find a treatment or cure. You can’t just give up on life, and Garrett embraces that,” she reflected. “He is driven. He wants to go to college some day. He is definitely looking at his future prospects. I have known some adult EB survivors who went through a ‘why should I try?’ attitude. Garrett looks at life like he is going to live a very long time despite the odds.”