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SML family spreads awareness for son’s rare medical condition

They will hold a fundraiser at the end of April
Published: Feb. 23, 2022 at 12:43 PM EST
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SMITH MOUNTAIN LAKE, Va. (WDBJ) - When you’re 13, you’re an expert on sleeping in, Marvel movies and videogames.

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

A condition so rare, only around 900 people in the world are known to have it.

“Shortly after he was born, we noticed his big toes almost looked like they had bunions,” remembers Kim Hanf. “Then when he was about five or six weeks old, he grew lumps on his head. That started us going to lots of doctors.”

Doctors who said Tyler was all around a normal healthy kid.

“For his 12-year annual physical, he got a vaccine. A few weeks later, his shoulder blade and a whole area of his back just blew up.”

That instance led them to realize that their son is literally one in a million. In November of 2020, Tyler was diagnosed with Fibrodysplasia Ossificans Progressiva, or FOP. It’s a disease with which bone forms in places it shouldn’t, like tendons, muscle, and connective tissue.

Flareups can be caused by trauma, muscular stretching, overexertion, or sometimes nothing at all.

Tyler can’t move his neck, and has limited mobility in his arms. Because of this, a few daily tasks are challenging.

“Just getting dressed. I can’t write anymore,” says Tyler. “But other than that, nothing that hard.”

The disease typically starts in the upper body and spreads to the lower.

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

“Almost everybody with FOP gets misdiagnosed. They undergo unnecessary medical treatment that sometimes causes flareups and makes the FOP worse,” notes Kim. “The big sign is that everybody who has the classic gene mutation for FOP is born with abnormal big toes. If everybody could just think of that when they see a baby, it could spare other children from being misdiagnosed.”

Riding for Tyler
Riding for Tyler(Riding for Tyler)

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

Riding For Tyler will take place 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 entertainers to volunteer their services for the event.

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

“The event coming up is to raise money for me and any future medical stuff that I need. It feels 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 through email at moosepiestudios@yahoo.com.

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

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