Area children get ‘life changing’ adaptive equipment
The children had waited so patiently as the adults talked on about Variety, the Children’s Charity and the wonderful work that they do distributing adaptive equipment to families. But, the bikes were right there just waiting for someone to ride them, and the children were ready even if the adults weren’t.
Finally, they were taken to their bikes.
“Bye,” said Haven Hufnagle, 7, as she got on her bike. She was ready to move.
For Haven, having a bicycle she can ride represents freedom, said her mother, Heather Hendershot, Montoursville.
“She can be like the other kids in the neighborhood,” Hendershot said, adding that this was Haven’s first bike.
The event, which was held in Penn College’s Field House, brings children with special needs together with adaptive equipment — bicycles, strollers and communication devices to give them the opportunity to be more independent.
Haven’s teacher at Schick Elementary School, Katherine Spagnuolo, agreed.
“I think it gives them independence. Haven is a very independent girl, and with this bike, I think she’s just going to be able to take off and kind of just explore the world the way she wants to, and I think that goes for all the kiddos,” Spagnuolo said.
“I mean, the smiles on their faces are amazing. And they’re just so happy and proud of themselves,” she added.
In the presentation leading up to the distribution of the bikes, Charlie LaVallee, chief executive officer of Variety, the Children’s Charity, had shared stories of children who had received the equipment and how their lives had been enriched.
One young man — Brian — who had seizures due to brain surgery, had ridden in the Labor Day parade in Pittsburgh, said LaVallee, who is based in the western part of the state.
Brian, who was 12 at the time, said during an interview that he “wanted to show my ability to the world,” Lavallee said.
There was another young man, 16, who had never ridden a bike, who during the opening presentation at a similar event kept saying, “Ma, this is my bike, right? I can take it home.”
“He couldn’t believe it. He was going to have his own bike. He could ride with his friends, to be accepted, to feel like he belonged,” LaVallee said.
The strollers that were distributed allow families to visit places, like restaurants that may have been nearly inaccessible before, to spend time together.
Variety has over a thousand communication devices funded, which are distributed directly to the children’s speech pathologist.
“(The devices are) for kids who need to have a voice, who need to be able to say, ‘I love you, Mom,’ or ‘I’m in pain,'” LaVallee said.
“Think of how critical a voice is,” he added.
To qualify for the adaptive equipment, a family of four can earn up to $150,000, which LaVallee said was a conscious decision by Variety.
“If you’re raising a child with disabilities, you’re spending four to five times the cost of a typical child,” he said.
Getting the word out is important, he said. Parents can talk to their child’s teacher, the Intermediate Unit, like BLaST Intermediate Unit 17, which held the event and to other parents.
Locally, 35 bikes, 21 strollers and 47 communication devices have been given away, said Christina Steinbacher-Reed, executive director of IU 17.
“That’s amazing and life-changing,” she said.
The high point of the day for the children was when they finally got on their bikes and were able to ride around the Field House. They were joined by Steinbacher-Reed and local government officials.
Before the event began, 6-year-old Mikki Harper was being fitted for her stroller and bike. Although she wouldn’t be riding in the “bike parade” with the others, she had brought her purple kitty helmet which she had picked out in anticipation of future opportunities to ride.
Mikki has Kleefstra Syndrome, which is a rare genetic disorder which can create developmental delays and speech issues.
Referring to the stroller she would get, her mom, Michelle Harper, said, “It’s a struggle to find anything with her delays and stuff that matches her needs.”
“This program will implement more directly what she needs, versus just going out and buying something off the store shelves,” Michelle Harper said.
With the bike she’ll be getting, Mikki’s mom said that it will enable her to ride bikes with her brothers.
LaVallee said that he never gets tired of handing out the equipment to families. So far, they’ve distributed over 6,000 devices, bikes and strollers totalling over $9 million.
“I didn’t know that could happen. I remember my best friend who I rode bikes with in Pittsburgh, and it seemed to me everybody should have that kind of basic experience,” he said.