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A handicapped girl's journey paves the way to help others in Western Pennsylvania

Deb Erdley
| Monday, Oct. 15, 2018, 6:03 p.m.
Jaxon Grayson, 3, of Hempfield flashes a grin at his mother, Amber, as he tries out his new medical stroller.
Jaxon Grayson, 3, of Hempfield flashes a grin at his mother, Amber, as he tries out his new medical stroller.
Kimberly Neal, of West Kittanning, shows off a poster promoting the work of Reagan’s Journey.
Kimberly Neal, of West Kittanning, shows off a poster promoting the work of Reagan’s Journey.
Kimberly Neal and her daughter Reagan, 10. Reagan was the inspriation for Reagn’s Journey, a lending closet with medical equipment and supplies for special needs children.
Kimberly Neal and her daughter Reagan, 10. Reagan was the inspriation for Reagn’s Journey, a lending closet with medical equipment and supplies for special needs children.

At 10, Reagan Neal walks with a spastic gait, a byproduct of cerebral palsy.

She falls from time to time.

But the slender girl with red glasses walks. Her family celebrates her accomplishment.

“She didn’t walk until she was six, and she is on the autism spectrum,” Kimberly Neal said, smiling as her daughter — who was the inspiration for Reagan’s Journey — gives her a quizzical look.

Reagan’s Journey is a lending closet that takes in durable medical equipment and supplies — most from families whose children have out grown them, but some purchased with grants — and loans them to other families in need.

In the two years since it opened, the lending closet has grown from its beginning in Neal’s West Kittanning home to a location it shares with Habitat for Humanity on Jefferson Street in Kittanning. A second site recently opened one day a week in Penn Hills. The demand there has Neal looking for a site in Pittsburgh.

Although medically challenged and fragile children are eligible for a variety of supports, most require a specific diagnosis that can take months. And when insurance falls short of covering everything families need, the costs add up.

Reagan sees Dr. Jason Edinger, director of the Cerebral Palsy Clinic at UPMC Children’s Hospital of Pittsburgh.

Edinger said many families struggle as they work to acquire the equipment needed to make life easier for children facing multiple challenges.

“Most insurance companies have a narrow view of what equipment is medically necessary. For instance, many use an older definition of wheelchair, which defines it as a device that is necessary for mobility only within the home. This is often the justification for not paying for a wheelchair ramp or to not pay for an activity chair,” Edinger said.

Reagan, a fifth-grader at the Western Pennsylvania School for the Deaf, has benefited from the support of her parents, Kim and Fred, as well as older siblings, Reese, 12, and Chase, 18. Although she is nonverbal, she can communicate through sign language.

But it has taken a lot of love, support, therapy and equipment along the way to get Reagan where she is today.

When Neal, 38, of West Kittanning realized pricey equipment and specialized toys Reagan had outgrown were beginning to gather dust, she had a brainstorm.

“Just about every family in our situation has two or three pieces of equipment gathering dust in a shed somewhere. We had five. And there were other families out there who needed it,” Neal said

Amber and Zac Grayson of Hempfield are glad she acted on her idea.

Reagan’s Journey provided the couple with a $3,000 specially-equipped medical stroller. It will allow them to take their 3-year-old son, Jaxon, who has managed to escape every stroller thus far, out and about safely.

The tot with big brown eyes, long eye lashes and a knockout smile has yet to speak. He also is on the autism spectrum.

Zac Grayson said they are looking forward to taking Jaxon to Penguins games in the stroller now that they have a device that can get them into the handicapped seating area at PPG Paints Arena in Pittsburgh.

“We always celebrate the small things,” Amber Grayson said, as Zac and Jaxon tried out the stroller. “We had to wait for two years before we got a diagnosis, and during that time we had $15,000 in out-of-pocket medical costs.”

Shannon Berndt, who lives more than two hours away from Kittanning in Blair County, taps the resources available at Reagan’s Journey. Berndt said she makes a point of stopping by when she and her son, Cowan Mikolajczyk, schedule trips to see specialists in Pittsburgh.

Cowan, who will be 3 in January, was born with a genetic mutation that left him with multiple disabilities, including uncontrolled epilepsy, visual processing issues and low muscle tone.

Berndt found Reagan’s Journey online when she was reaching out to develop a support network for her son.

Medication has helped with his seizures, and he has glasses to make the most of his vision. But those are just two of the many challenges Cowan faces.

“I came to swap out a positioning chair (a special support device used in his stroller so he doesn’t develop scoliosis) and return a borrowed bath chair because we finally got ours through insurance,” Berndt said as Cowan slept peacefully in his stroller, a crown of curls surrounding his round cheeks.

Neal said she’s amazed at how the lending closet has grown. To date, they’ve taken in and provided 183 pieces of equipment — including wheelchairs, walkers, standers, adaptive seating and medical supplies — that are passed along to families in need.

“Sometimes in two weeks, we’ll send out $8,000 to $10,000 worth of equipment,” Neal said.

She has started writing grant applications and is talking to foundations about the lending closet’s work. Neal said she would like to have a stock of some of the items most families never think about that can make a difference when something goes wrong or breaks.

“You can get a feeding tube button through insurance. But one button costs $150, and it’s nice to have a spare on hand,” she said.

The lending closet’s resources come from a variety of donors.

The stroller the Graysons borrowed arrived among a trailer full of gifts from a family whose 3-year-old had died.

“They waited two years, and then they brought us a trailer full of things. They just felt good about it going to someone who needed it,” Neal said.

Back at the Cerebral Palsy Clinic, Edinger said Reagan’s Journey is providing a vital service.

“Many devices that are outgrown are unfortunately thrown out or go unused,” Edinger said. “There are a few other lending programs in the area. The Western Pennsylvania School for Blind Children has a lending program, and the Muscular Dystrophy Association also has a lending program. I am personally grateful that Ms. Neal is willing to provide this service for families. It is definitely needed, and I know many other families who have benefited.”

“It’s our way of giving back,” Neal said, flashing a smile.

Deb Erdley is a Tribune-Review staff writer. You can contact Deb at 412-320-7996, or via Twitter @deberdley_trib.

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