Community turns out to help girl with rare bone disease

Community turns out to help girl with rare bone disease
GIG HARBOR, Wash. - The local community gathered Saturday to raise money for a teen with a bone disease so rare that there are only 700 confirmed cases throughout the world.

These community supporters are walking for Jordyn Valona, a 16-year-old with a rare genetic condition that's turning her body into bone.

"It means a lot to me. A lot of support they've given me," says Jordyn.

When you speak with Jordyn and her friends it's like any conversation with teens - they like to shop, gossip and talk about boys. But Jordyn's health has priority. She was diagnosed with Fibrodysplasia Ossificans Progressiva, or FOP, four years ago and deals with constant pain.

"Being here to support her is awesome," says a friend.

Jordyn's mother, Arica Valona, says Jordyn's body reacts to any kind of bump or injury - no matter how minor - by turning muscles, tendons, and other connective tissues to bone. Flare-ups of bone growth can happen at any time, spontaneous or as a result of trauma - and are irreversible.

Any bump or trip can cause a flare-up, stiffening limbs and immobilizing joints. There is no treatment, beyond trying to manage pain associated with the bone growth. Jordyn took a bad fall in February, and lost movement in her right knee. She won’t get it back.

"For a normal person - for you and I - our body would repair itself and heal itself with new tissue. ... For an FOP patient it grows bone," says Arica Valona.

Complicating matters further, the family does not currently have medical insurance. So friends, neighbors and even strangers are stepped up to help with a fund-raising walk and 5K run on Saturday.

At the event for Jordyn, other FOP patients and their families came here to support the cause. One of them was Karen Munroe of Canada, whose daughter was diagnosed with FOP when she was 2 years old.

"When we finally made contact with other families dealing with FOP it was so unbelievably helpful," she says. "It's beyond words. You can't even imagine what it's like to get a diagnosis like that."

The disease is so rare, there are only 115 known cases in the United States.

Despite the struggles, Jordyn's family says it's imporant to live a normal life.

"She wants to do everything all of us do - she just does it in a different way. We do the same things - just find a different way to do them," says her mother.

Jordyn Valona also suffers from epilepsy and has calcification around her brain due to seizures.

All of the funds raised at Saturday's event will help pay for Jordyn's care and medical needs.