SMITH MOUNTAIN LAKE, Va. (WDBJ) — When you’re 13, you’re an expert on sleep, movies, and Marvel video games.

Most 13-year-olds don’t have an extremely rare medical condition to think about.

A condition so rare that only about 900 people worldwide have it.

“Shortly after he was born, we noticed his big toes almost looked like onions,” Kim Hanf recalled. “Then when he was about five or six weeks old he developed bumps on his head. This led us to consult many doctors.

Doctors who said Tyler was a normal, healthy kid.

“For his 12-year-old annual medical, he received a vaccine. A few weeks later, his shoulder blade and a whole part of his back exploded.

This example led them to realize that their son is literally one in a million. In November 2020, Tyler was diagnosed with Progressive fibrodysplasia ossificans, or PFO. It is a disease in which bone forms in places where it should not, such as tendons, muscles and connective tissue.

Flares can be caused by trauma, muscle stretching, overuse, or sometimes nothing at all.

Tyler cannot move his neck and has limited mobility in his arms. For this reason, some daily tasks are difficult.

“I just got dressed. I can’t write anymore,” Tyler says. “But other than that, nothing too difficult.”

The disease usually begins in the upper body and spreads downward.

The Hanfs are on a mission to raise awareness of the disease, as misdiagnosis can actually be dangerous.

“Nearly everyone with FOP is misdiagnosed. They undergo unnecessary medical treatments that sometimes cause flare-ups and make FOP worse,” Kim notes. “The big sign is that everyone with the classic FOP genetic mutation is born with abnormal big toes. If everyone could think of this when they see a baby, it would save other children from being misdiagnosed.

Tyler’s family is also planning an event to give back to the community and raise money for his future medical bills.

Riding For Tyler will take place on April 30 at Crazy Horse Marina.

There will be pony rides, face painting, prizes and live music. The family is still looking for sponsors, vendors, raffle items and performers to volunteer for the event.

Tyler says he and his family are extremely grateful for the community support they have received.

“The upcoming event is to raise money for me and any future medical equipment I need. It’s really nice to know that so many people are just donating.

Those interested in getting involved can contact Mike Hanf at (603) 348-3560, or by email at [email protected]

There is also a page for the event created on Facebook.

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