Jordyn Valona: More than her disease

Audrey Gainey, Reporter

Jordyn Valona, like most seniors, has senioritis. She is tired of doing homework and is anxious to study fashion merchandising in college. But, unlike most seniors, Jordyn also suffers from Fibrodysplasia Ossificans Progressiva (FOP) and epilepsy.

FOP can be hard to explain, and is not often heard of in colloquial conversation.

“She is essentially growing a second skeleton, causing her to become immobile,” Jordyn’s mother, Arica Valona said.

As Jordyn’s body turns to bone, precautions must be taken to prevent more ‘flare ups.’

“Dramatic injuries can cause flare ups for Jordyn,” junior Mackenzie Cude said. Cude is one of Jordyn’s good friends.

These flare ups, prevent movement in the ligaments, and are irreversible. Not many people can empathize with her, as it is an incredibly rare disease..

“Only 700 people in the whole world have it. Every 1 in 2,000,000. You would have to fill 20 football stadiums to find 1 person with FOP,” senior Jordyn Valona said.

Fortunately, for her senior trip she was able to travel to Florida, to meet other FOP patients.

“Mackenzie and I went in November to Florida to meet other FOP patients. It was sad to see the adults who have it, but it was especially sad to see the kids, younger than me who have it. I wasn’t diagnosed in 2008, so I had a normal childhood; they had nothing,” Valona said.

Valona, because she did not develop her disease until later in life, was able to enjoy things that other kids could.

“The fact that Jordyn didn’t develop FOP until she was 12 was a God-sent miracle. She could jump on trampolines, ride horses, wrestle with her brothers; all the things a normal kid could without having to worry about what would happen to her,” Arica Valona said.

But just because she had a ‘normal childhood’, does not mean she has not lost moments of her life. Valona, on top of having FOP, also has epilepsy.

“She suffers from grand mal seizure disorder, and general absence disorder. She can have several seizures in one minute,” Arica Valona said.

Despite the challenges that Valona must face everyday of her life, she keeps a positive outlook.

“She never ceases to have a smile on her face. She’s so strong. Sometimes things may knock her down, but she never lets them break her down completely,” Cude said.

Although, with the conditions that she has, it is inevitable that there will be tests of friendship and family bonds.

“Her being diagnosed was the scariest day of my life. You know, as a parent, you have all these hopes and dreams for your child. After she was diagnosed a lot of those hopes and dreams had question marks,” Arica Valona said.

Diagnosing Valona for FOP was not an easy process. The Valonas had to see seven doctors in two different states before someone could figure out what she had. Several doctors even told Valona that ‘it was all in her head’, even though she had had medical ‘red flags’ since the age of three. Neurofibromatosis (NF)  is a disease that causes non-cancerous tumors to grow, and for Valona, they were located in her shoulders.

FOP prevents Valona from enjoying things that most people take for granted, such as hanging out with friends, going out with the family, or having a birthday party.

For her 18th birthday she said she got her hair done, went out to lunch, and then threw up all night because of her illness.

“The day after my 18th birthday I was taken to the hospital, and I was in there for six days,” Valona said. “It was terrible.”

Even though there is no cure, and there is no treatment, Arica Valona feels that her daughter is blessed in spite of the challenges.

Many patients do not enjoy the same positive outlook that Valona has on life.

`“I don’t want to put limitations on Jordyn. I’ve never wanted her to feel restricted. I’ve seen patients who view their life from their beds. We can try to shelter our kids, but there is a difference between shelter and smother,” Arica Valona said.

It is clear that while Valona has certain attributes that set her apart, she is so much more than those. It is important to Valona and her mother that people see more than just her diseases. That they see a regular teenage girl who gets into pesky arguments with her mom, and discusses how ‘attractive Cody Simpson’ is with her friends; that people understand she is not ‘the girl with the bone disease’, but Jordyn Valona, the girl who just happens to have the ‘bone disease.’

“Aside from all the conditions that Jordyn has, she is still a normal person,” Cude said.  “They don’t define her.”