It would have taken a belt sander and some coarse grit sandpaper to wipe the smile off 5-year-old Jackson’s face. His mother had settled him down into an oversized stroller and said, “That’s yours now, Jackson.”
“I like this,” he said, his toothy grin stretching from ear to ear. Another satisfied customer of Equipment Connections for Children, a charity that loans adaptive equipment to Washington-area kids with physical disabilities.
I visited the nonprofit group’s Gaithersburg, Md., offices on a recent Saturday, when families had appointments to be matched with specialized — and expensive — equipment.
Equipment Connections was founded in 2010 by Claire Wong, a physical therapist who works in Montgomery County for Children’s National Medical Center. During home visits, Claire saw that families often lacked equipment that would be useful not only for therapy but also in simply improving a disabled child’s life: gait trainers, standing frames, bathing seats, strollers, tricycles.
“A lot of people think insurance will pay for whatever a child needs,” Claire said. “That’s not the case.”
A wheelchair or power chair is usually covered by insurance, even if it takes months of paperwork to get approval. Other items can be harder to get, unless the parent is able to pay out of pocket. But children outgrow equipment. And sometimes equipment is purchased with high hopes, only to end up not being quite right for that child.
“I got more and more frustrated,” Claire said.
She turned to the physical therapist community. Let me know if you have a patient who could use a piece of equipment, she said. And let me know if you have a patient who has outgrown a piece of equipment. Claire rented storage space as items began coming in. In May, she moved to a light-industrial area near the Montgomery County Airpark.
“Nothing for children is off the shelf,” Claire said. “It’s all customized, because their bodies are growing. They need specialized fittings.”
That makes the gear expensive. Strollers — with five-point harnesses, side supports and back supports, and loops that allow them to be tied down on a bus — can run from $800 to $2,000. A gait trainer costs between $500 and $1,200, a standing frame as much as $4,000.
Standing frames are among the most important, and costly, items that Equipment Connections loans.
“Weight bearing is important for a child,” Claire said. “Bones develop when they stand. Some children are so weak they cannot stand on their own, especially when they’re first getting up.”
A standing frame holds the knees and back. Spending part of each day in one improves not just bone density but balance, kidney function and head control.
Volunteering at Equipment Connections means being a bit of a tinkerer. When I visited, Staci Kovelman, a doctor of physical therapy who works at Children’s, was adjusting the foot rests on a chair as a 4-year-old girl and her mother waited patiently.
Meanwhile in the back were stacks of aluminum gait trainers, which resembled the walkers you might see Grandpa shuffling around in, but miniaturized. There was a large, hand-powered tricycle. Shelves held boxes of pads and straps and Velcro.
Last year, Equipment Connections donated 251 pieces of equipment. If a piece sits in inventory for too long, and is unlikely to find a home in the Washington area, Claire donates it to an organization that sends it overseas. (If your family needs equipment — or has something to donate — visit www.equipforchildren.org.)
As Claire and Staci fitted clients out front, volunteers Jan Maloney and Ashley Gonzalez were in the back, busy cleaning a complicated standing frame. They wiped it down with Simple Green and took a toothbrush to its nooks and crannies.
“I want it to be looking brand new,” said Jan. She’s familiar with the challenges that parents face. “I lived this life with my son, Daniel,” she said. He was 21 when he died, 12 years ago. Jan wishes Equipment Connections had been around for him.
Ashley, 12, recognized something nearby in the Aladdin’s cave of equipment. It was the very gait trainer that her 5-year-old brother, Arnaldo, had used. It featured a cradle to support his body and armrests he could hold onto. Arnaldo used it until he got too big. Now it was back in the pipeline, ready for another child.
I asked Ashley what Arnaldo had thought of the gait trainer.
“Well, he can’t really talk,” she said, “but he got very excited. He would move his legs, like hopping, but walking.”
He was moving forward.
For previous columns, visit washingtonpost.com/johnkelly.