By Rachel Belle

Listen to Feature: An Update on Jordyn & Her Wheelchair

Last October I introduced you to 15-year-old Jordyn, a Gig Harbor high school student with a very rare condition called FOP that is slowly turning her body into stone.

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

Four years ago, Jordyn was taking ballet classes and cheerleading, but when Jordyn discovered some bumps on her body that weren’t healing. She was later diagnosed with FOP.

“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.”

Jordyn needed a custom wheelchair that cost $6,400, but the family has an extremely limited insurance plan that wouldn’t pay for the chair. So we put out a call to you, The Ron and Don Nation, and you came to the rescue.

“The listeners were so generous, they donated over $3,000. In fact, money has still kept coming in over the months. Since then, we have one listener who has remained anonymous who still send in a small donation every single month just to go towards Jordyn’s continuing medical costs, which is amazing and so appreciated. It’s just…wow. Wow, for me.”

The family organized a walk-a-thon last November, and they raised another $11,000 for the chair and Jordyn’s extremely expensive medical costs.

“The listeners came down, introduced themselves. It was just a really neat connection to be able to have. It just was an amazing outpour.”

Since so many of you helped Jordyn, I thought you want to get an update on her condition.

“Jordyn, unfortunately, right before her sixteenth birthday, took a fall at home and suffered a concussion and a fracture in her right knee. Her right leg was already compromised by her condition, but this worsened the situation. Hence, having the wheelchair right there, ready to go, was amazing and just so timely. This is exactly what I was worried about, and in fear of, all these months that we did not have a functional wheelchair for her.”

Luckily, Jordyn is doing okay, she hit the back of her head so she still has full movement in her face and jaw. But as you can imagine, the 16-year-old girl was not excited to get a wheelchair.

“After the accident, her Young Life group came together and they said ‘You know, let’s decorate this chair.’ So they blinged it out. We had the zebra duct tape and rhinestones and pink pink pink. Completely glammed and deva’d it out for her. Having other people accept it, she was able to accept it. I think, at sixteen you don’t want to be different, you want to be like everybody else.”

Jordyn isn’t completely wheelchair bound, and she tries to stay on her feet whenever she can.

“She’s going to walk as long as she can. Whether that means she’s hobbling or limping or whatever the case may be, she’s going to do that. So we use the chair as a backup, especially when she gets fatigued.”

Unfortunately, the family’s insurance situation has gotten worse. Her husband is a contractor, so they have a very minimal plan that doesn’t pay for much, but because they have some coverage, the state won’t help them either.

“It’s very frustrating that we fall into that middle category where the employer may or may not offer insurance anymore and then you can’t get state benefits. It’s just a very gray area for most of middle class America. We are not the only family struggling from this.”

Arica and her family wanted to make sure that our listeners know just how appreciative and thankful they are for all the support you’ve given to Jordyn.

Who is Rachel Belle?