UATP is a federally-funded program serving individuals with disabilities of all ages in Utah. We provide assistive technology devices and services. We also train university students, parents, children with disabilities and professional service providers about AT. Our goal is to increase independence and quality of life for people with disabilities. Learn more at www.uatpat.org.
Thursday, August 8, 2019
UATP wheelchair brings long-awaited relief to a Utah girl and her family
Tyler, Aubrey and Marissa Peck
AMERICAN FORK--When Audrey Peck was diagnosed with two uncurable and serious illnesses, her family’s life became something of a research project.
The 11-year-old has both juvenile dermatomyositis (JD) and lipodystrophy. The first is an autoimmune disease affecting her muscles and joints. The second attacks the fat under her skin, which in turn causes other problems. Her first diagnosis, the one for JD, came in 2014.
Her family keeps a small chest-full of medications to manage the two conditions. Aubrey’s been involved in National Institutes of Health studies. Her parents have undergone genetic testing and submitted the stuff they vacuumed off the floor in their home. Their DNA and floor dust were studied so that researchers could better understand the genetic and environmental factors surrounding Aubrey’s health.
Doctors at Primary Children’s Hospital in Salt Lake City told Aubrey’s mother, Marissa, that they have never seen both conditions in one child before, and they never will again.
When her parents told the story around their kitchen table, Audrey shrugged and shook her head. “I’m special.”
Her parents shook their heads, too. “You’re special,” they agreed.
Then Aubrey looked through the old photos Marissa brought up to show how the diseases had progressed, and cringed. She wasn’t complaining about the diseases. She just didn’t like how she looked in some of the pictures.
Marissa and Aubrey’s dad, Tyler, pointed out that even though Audrey has missed a lot of school, she’s pulling excellent grades. They live in a busy home, with a dog that wants attention and siblings who want to know what everyone else is up to. The family has done a lot to adapt to life with chronic illness, but medical bills piled up. When they decided they needed a new wheelchair to fit Aubrey’s growing body, insurance wouldn’t pay for it. The Pecks couldn’t afford to buy one out of pocket, either.
A new wheelchair would help keep Aubrey off her feet. “She would call me all the time, ‘My feet hurt, my legs hurt,’” Marissa said. They hurt often, but especially when she’s on them too much.
Meanwhile, Aubrey was squeezed into a stroller-chair intended for a much smaller child. Not only was it too small; it made Aubrey dependent on having other people push her. She solved this by sitting in the stroller and pulling herself forward with her heels, but that defeated the purpose of relieving the strain on her feet and legs.
Marissa wanted Aubrey to stay in school as much as possible. She misses a lot due to her health conditions; it was discouraging when she wanted to go home because of the pain in her feet.
Eventually Marissa and Tyler decided to sell a vehicle and use the money to buy a wheelchair for Aubrey.
They found a buyer. Then the person who was going to buy the car drove off with it without paying for it. They never got the money and they don’t know where he went.
It's blue, like she wanted. What’s even better: it’s lightweight, and it’s easy enough to put together, Aubrey can do it herself.
With the new wheelchair in hand, Marissa gave the old stroller-style chair to the school. Another child was using it a week later.
While the journey has been long for the family, Marissa has a strong desire to give back and pay forward. The family has received a lot of support from neighbors, people in their church congregation, and the school.
“We don’t know what the future holds, and the doctors don’t, either,” she said. “But we have a good team. A really good team.”
UATP is part of the Center for Persons with Disabilities at Utah State University. The Salt Lake City location transfers donated, refurbished chairs to people who need them, for an affordable fee. For more information, call 800-524-5152.