There are beneath 1,000 identified instances of fibrodysplasia ossificans progressiva (FOP) worldwide, and a kind of identified with it’s a 12-year-old boy in Franklin County.
FOP, one of many rarest, most disabling genetic circumstances on the planet, turns muscle tissues, tendons and ligaments into bone, and people bridges of additional bone transfer throughout the joints within the physique, which prohibit motion.
In line with the Worldwide Fibrodysplasia Ossificans Progressiva Affiliation, FOP is principally a wholesome thoughts that’s imprisoned in a frozen physique. There isn’t a treatment for it.
Tyler Hanf, who’s 12 years previous and attends Benjamin Franklin Center Faculty in Rocky Mount, was identified with FOP in fall 2020. From the second he was born, the signs of FOP had been seen on his toes, which regarded irregular.
“We thought that he simply had these bumps that regarded like bunions that he was born with on each of his huge toes,” mentioned Tyler’s mother Kim Hanf. “Everyone instructed us that it was no huge deal.”
When Tyler was six weeks previous, he developed three lumps on his head, and docs found via diagnostic assessments that he developed a lump in his clavicle. A physician instructed Tyler’s dad and mom that they believed the lumps had been a case of cranial fasciitis. This can be a uncommon benign tumor of the cranium that happens in kids youthful than 6 years previous, in keeping with ajnr.org.
The physician really useful they be eliminated as a result of the lumps had been pushing into his cranium and denting it. At three months previous, Tyler had surgical procedure to have the lumps eliminated, however they shortly grew again and went away on their very own.
His signs wouldn’t go away. As an alternative, they began to develop into extra seen. Final yr, Tyler wasn’t in a position to transfer his head aspect to aspect anymore. If he needed to maneuver his head, then he needed to flip his shoulders to the aspect as effectively. Extra lumps began to type as not too long ago as final fall.
A couple of days earlier than Labor Day final yr, after taking part in cornhole, Tyler developed a big swelling on his again that was the scale of a soccer, which once more had his dad and mom involved about what was taking place. The physician they visited instructed each Kim and her husband Mike Hanf that they wanted to get Tyler to the College of Virginia hospital as a result of she felt it may very well be an emergency scenario together with his muscle tissues beginning to develop into inflexible, which may affect his respiratory. Their journey ended with the identical previous track and dance: no solutions and being instructed there wasn’t something critical happening with Tyler.
Nonetheless, the message was the identical: Tyler’s situation was in contrast to something the docs, orthopedics or specialist had ever seen. With just one in two million born with FOP, the probabilities that any of the docs would see instances like that is slim, which explains why they had been baffled over Tyler’s situation.
“You wouldn’t consider what number of instances we had been instructed by them that they’ve by no means seen something like this earlier than,” mentioned Mike Hanf. “‘We don’t know’ had been the phrases that saved popping out of their mouths.”
Tyler then went to an orthopedist who scheduled MRIs of the neck and again and in addition began to see a bodily therapist to work out his shoulders. The bodily therapist instructed Mike and Kim Hanf that it was unusual how his shoulder blades received’t transfer or budge. She instructed them that attempting to maneuver his shoulder blades doesn’t harm Tyler, however he simply can’t bodily do it. The bodily therapist really useful to Mike and Kim Hanf that Tyler ought to have an MRI of the mind.
As soon as the outcomes of the neck and again MRIs got here again, the orthopedist had some considerations and despatched him to a geneticist in Roanoke. As soon as the outcomes of the mind MRI got here again, Kim Hanf bought a name from the geneticist, who instructed her that there was some abnormality and mentioned the radiologist had by no means seen something prefer it earlier than. The geneticist despatched the movies to UVA, the place the neuroradiologist made a prognosis. Kim Hanf mentioned the geneticist regarded up the signs and confirmed that it match with Tyler’s.
“I used to be utterly blindsided to get such a prognosis,” mentioned Kim Hanf.
Having a genetic check performed to verify the prognosis, Mike and Kim Hanf mentioned they had been instructed by a physician that the DNA of these with FOP exhibits that one of many six billion letters of genetic code is misplaced, which causes this uncommon illness.
Though Mike and Kim Hanf spent 12 years attempting to determine what was happening with their son, which could be irritating, they’re removed from alone on that finish. Actually, misdiagnosis occurs on a regular basis for these with FOP, and one misdiagnosis of FOP is well-known world wide.
Ashley Kurpiel was only a toddler when she developed a lump. Docs thought it was a cancerous tumor, which led to them amputating her proper arm and shoulder. Come to seek out out, although, she by no means had a cancerous tumor, nevertheless it was a misdiagnosis that value Kurciel her proper arm.
Now realizing what he has and can dwell with the remainder of his life, Tyler doesn’t let it get to him. He makes it clear that he doesn’t dwell in worry however acknowledges he does have some struggles in his private life.
“It’s exhausting to maneuver round and do a number of issues, like placing on my shirt or sweatshirt as a result of I can’t attain round or over my head,” Tyler Hanf mentioned.
It wasn’t till a month in the past when Tyler was in a position to put a shirt on by himself since dropping the mobility in his shoulder blades simply earlier than Labor Day. He noticed his dad and mom exterior together with his neighbors and needed to affix them, however as a result of he was so use to his dad and mom serving to him gown, he needed to determine it out by himself with dressing sticks that he has. It took him some time, however Tyler was in a position to determine it out and gown himself.
He additionally faces some points with one in every of his knees, which is able to lock up if he bends it greater than 90 levels. To work it out, Tyler will stroll on his knees or hop to the steps. He talked about his knee may even lock up each morning when he wakes up due to how he sleeps.
On the subject of showering, Tyler talked about he can’t wash his hair or his again due to his restricted movement, however they’re at the moment looking for methods for him to have the ability to accomplish that.
So far as his social life, Tyler says he has no downside in school and says his classmates don’t deal with him any totally different and even ask why he’s bodily restricted in some methods. He can’t take any bodily training because of the threat of falling and inflicting trauma.
“The one actual factor it impacts me in school is reaching up and in entrance of my desk,” Hanf mentioned.
One in every of Tyler’s favourite hobbies is constructing Legos, which he has scattered on the household’s ping pong table. He has a grabber that he makes use of to achieve for Lego items which can be a bit bit out of attain on the ping pong table and scrapes it towards him.
“Legos and video video games are my escape from every part,” Tyler Hanf mentioned.
Tyler additionally mentioned he likes to journey his horse, Charlie, which he can nonetheless journey despite the fact that he struggles to get on at instances. Kim Hanf mentioned their horse is extremely affected person with Tyler and is all the time so mild round him.
He talked about his need to be a sport warden when he grew up because of the TV program known as Northwood’s Legislation, however knew his limitations wouldn’t make that attainable.
With Feb. 28 being Uncommon Illness Day, Kim Hanf mentioned her greatest factor now could be she needs individuals to study in regards to the uncommon illness and the way it impacts those that dwell with it. Mike and Kim Hanf plan to do a fundraiser on the finish of April, which is able to embrace free pony rides, free yard video games, a yard sale and a bake sale, which shall be known as Household Funday for Tyler. Anybody who’s within the fundraiser can look it up on Fb beneath “Driving for Tyler #cureFOP.”
On the finish of the day, each Mike and Kim Hanf simply need their son to keep up his persona and to by no means lose it throughout his journey with FOP.
“He’s simply so enjoyable, good, upbeat and by no means lets this get him down,” Kim Hanf mentioned. “It doesn’t matter what mobility he loses, there’s all the time a approach to adapt and to nonetheless do enjoyable issues.”
Even with this uncommon illness, Tyler Hanf doesn’t attempt to promote it or acquire sympathy. As an alternative, he wakes up each day for college, will get on the bus, and goes about his faculty day with out ever pondering of his situation, and he needs to maintain it that manner.
“I don’t even give it some thought,” Tyler Hanf mentioned. “To me, I’m simply one other child.”
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