Help 15-year-old Jordyn get her wheelchair

By Rachel Belle

Arica (left) and Jordyn Valona.

Listen to Help Jordyn Get Her Wheelchair

In many ways, Jordyn Valona is just your average 15-year-old girl. When I met her, she had colorful feathers weaved into her blond hair and a pair of Ugg boots on her feet. The Gig Harbor sophomore loves fashion and texting with her friends.

She used to cheer for her brother’s football team and take ballet classes, but about three years ago, Jordyn was diagnosed with a super rare disease known as FOP.

“There are about 700 known cases worldwide and 250 in the United States,” says Jordyn’s mom, Arica Valona. “It affects any soft tissue and turns it into bone when there is a trauma.”

For Jordyn, a trauma can be as simple as a stubbed toe. With every injury she loses more movement and slowly turns into a living statue.

“She has now become frozen from her neck all the way down to her waist and all the way down the right side of her leg and into her ankle. Her shoulder blades are fused to her back, so she can no longer move her arms and so she’s kind of in a straight jacket position. It’s very difficult for her to walk, to use the restroom. Eating has become more difficult for her.”

Arica says Jordyn needs a wheelchair to get around and to keep her extremely fragile body safe.

“We needed the wheelchair yesterday, literally. A couple days ago, unfortunately, she was here at school and someone was running a little too quickly through the halls and Jordyn fell on her good side. Kind of freaked her out, freaked me out, and just affirmed that the wheelchair is a necessity.”

But the family doesn’t have insurance. Jordyn’s dad does contract work and Arica had to quit her job to take care of Jordyn and her brothers. They already pay out of pocket for Jordyn’s frequent visits to see specialists at Seattle Children’s Hospital and for her medications. Now this custom wheelchair is going to cost about $6400.

“We, at this time, are kind of at the mercy of our community.”

Arica is organizing a fundraiser at Gig Harbor’s Peninsula High School, called Jordyn’s Walk, to raise money for the wheelchair. A chair that Jordyn needs but, understandably, really doesn’t want.

“It’s been very very sad to watch the progression. It’s affected every aspect of her life. She is so dependent on everyone around her. You know, the only thing she has control over is her thoughts. Not being able to be that ‘normal kid.'”

So when I met Jordyn at Peninsula High school we stuck to more normal topics. Like the fact that she had just asked a friend to the homecoming dance that day.

“He plays on the football team,” Jordyn told me. “So I got a football and I wrote his name and ‘homecoming’ with three question marks…”

For Jordyn, this could be the last school dance that she attends without a wheelchair. But her Mom doesn’t like her thinking that way.

“I look at the big picture and I have her focus on the now. The present is a gift and that’s why they call it a present.

The fundraiser for Jordyn’s wheelchair is on November 19th at 10am at the Peninsula High School track.

You can donate via paypal to Jordyn’s wheelchair fund using this email address: jordynswalk@gmail.com