Page 18 - Discover SPRING 2022

Riding for Tyler CONTINUED
with a chemotherapy drug without success, and then
switched him to a very powerful anti-inflammatory,
which has done a great deal to manage the pain.
“That has worked miracles,” Mike says. “We
have finally found something where he can be
comfortable every day.”
One can scarcely imagine the difficulty for
parents of a child with FOP, and the helplessness that
Mike and Kim Hanf felt was greatly relieved by this
treatment. They focus their energies on making Tyler
as comfortable and “normal” as possible.
Some of the assistive devices that are designed
for people with limited mobility are used by people
with FOP. Tyler has a special chair that is designed to
make him comfortable.
“At school, he has to have somebody write for
him,” Mike explains. “So he has a one-on-one in
school.”
This person travels with Tyler throughout the
school day, taking the chair along. They leave class
a minute or so early, so that they may traverse the
hallways while they are empty, to avoid being jostled
around by the crowd. This is essential because of
Tyler’s need to avoid any type of injury. A broken
bone could have devastating results.
Tyler is able to use his hands, and he is able to
walk, such as from room to room at home, or from
one class to another at school. However, he can only
walk comfortably for relatively short distances. For
longer distances, he has a mobility scooter, which he
will use to accompany his Dad while walking their
dog.
On a recent trip to New York City, Tyler and
Kim explored Central Park, with Tyler on the
scooter. He would dismount and take short little
walks at various points, and they covered pretty much
the entire park that way.
Tyler’s condition went undiagnosed until about
a year and a half ago. Prior to that, he was on the
basketball team, played T-ball, and rode horses, like
any other kid might do. Due to the extreme rarity
of FOP, the few signs that presented themselves
remained a mystery until just recently.
16 Discover Smith Mountain Lake SPRING 2022
Mike relates an analogy of how FOP works. Dr.
Kaplan explained that we all have a ‘faucet’ inside
our brains that makes bone. When you break your
arm, you get swelling, and the brain senses a need to
‘open the faucet’, and make new bone. In Tyler’s case,
the faucet is always open, and in the case of a broken
bone, it would likely open wider.
Researchers are hoping to arrive at a treatment
that will shut the ‘faucet’ off. The main concern
that they have is that halting the production of
bone might cause a young person to stop growing.
Thankfully, in Tyler’s case, it is a small concern, since
he is already well over five feet tall. A larger concern
is that it may lead to a failure of the body to mend
itself in the case of a broken bone.
Tyler handles his condition with an impressive
grace and maturity.
“I don’t think he likes giving it any more power
than it already has,” Mike remarks, “so he doesn’t
really like talking about it.”
Tyler is determined to live his life as fully as
possible. “I just want to be treated like all the other
kids,” he says.
“His attitude is fantastic every day,” Mike tells
me. “If I send him to his friend’s house, he’s the most
well-behaved kid there; I hear about it from all the
parents.”
Tyler’s friends have also made a huge impression.
When they get together for a party or any type of fun
gathering, whatever they choose to do always takes
Tyler’s ability to participate into consideration.
In the summer time, he will play in the 4 foot
deep pool with his friends, who will do what they can
to help him. “His friends are amazing…” Mike says
with a touch of pride in his voice. “The kindness that
they show… and just the respect that they show…
without having… to tell them. They want to make
sure that Tyler can do whatever they’re going to be
doing. It’s nice to know that they care enough to…
treat him like he’s just another kid.”
Tyler’s Mom, Kim, is determined to learn as
much as she can about FOP. Mike says that she’s the
kind of person who takes a very serious approach to