Winning team: Sheffield football team shares special day with ‘bravest kid,’ Bobby Johnson

Sheffield’s football team is tied for first place in the Allegheny Mountain League North division.

But to five-year-old Bobby Johnson, the Wolverines are champions of the world.

Bobby’s parents hope the football coach and players understand the impact they have had on their son’s life in such a short time.

Bobby has a genetic disease called Fibrodysplasia Ossificans Progressiva (FOP), or Stone Man’s Disease. When Bobby gets hurt, bone can form in muscles, tendons, ligaments and other connective tissues. The results, over time, can be increasing loss of mobility, pain or, in the worst case, the formation of a second skeleton – effectively trapping a person in his or her own body.

There are fewer than 800 cases worldwide, or a one-in-two million disease.

There is no known cure.

Bobby lives with this every day. But for one day he was captain of the Sheffield Wolverines football team.

And there was quite an impact.

“It’s something he will never forget,” said his father, Kyle.

When Sheffield assistant coach Dallas Ehrgott, a friend of the family, helped put this together, the Johnsons, who are from Warren, had no idea what it would entail. They said afterward that they probably should have known, given the closeness of the Sheffield community.

“The first time I got to meet him, I fell in love with the kid,” said Ehrgott. “I got to thinking, in the position that I’m in, why not do this for him.”

It wasn’t just any game; it was Homecoming, and Bobby might as well have been named King.

He was invited to a pep rally on Friday to meet the players and coaches, had dinner with the team at the Lions’ Den, and was given his own Sheffield Wolverines jersey and football signed by the entire team. He was in the Homecoming parade and, on the day of the game, introduced over the loudspeaker by the Voice of the Wolverines, Chuck Demko, as honorary team captain. He flipped the coin for possession, which Sheffield won. Bobby was invited to the locker room, and was handed an extra penalty flag by a referee.

But what was Bobby’s favorite part?

“Being the coach,” he says softly.

That’s not even what makes this story so sweet. The impact doesn’t end there.

They are inviting him back.

“Coach says that we are part of the team” for as long as we want to be, said Kyle.

It almost didn’t matter to the story that the Wolverines came from behind to win 28-14 up on Wolverine Mountain. Until you saw the players – players that had been interacting with Bobby all weekend – call Bobby out to the center of the field and start chanting his name:

“Bob-by…. Bob-by…. Bob-by.”

And they handed him the game ball.

“My guts (dropped),” said Bobby’s father.

It’s been a difficult first five years of Bobby’s life for Kyle and Carmen Johnson, who also have two daughters, Kylie, in fifth grade at Warren Area Elementary Center, and one-year-old Addison. You wouldn’t have to ask why, as Bobby was going out to the backyard for a picture for this article. He brought out his game-used football and started throwing it around.

Injury is not the only case in which Bobby grows more bone.

“Complete immobilization would be the worst-case scenario,” Carmen has described. “It varies from patient to patient.”

Bobby already has limited motion in his shoulders and neck.

Football would be out of the question, but Bobby is a five-year-old boy, who does love sports.

Imagine the stress on his parents.

But through research online, and the help of families of FOP patients, they have learned the best ways to let him play – trying to manage the risks.

“I would rather him feel that he can do anything in the entire world,” Kyle has said.

That’s how Sheffield head coach Dave Fitch said Bobby has made his team feel.

“Bobby was welcomed from the start by our team,” said the coach. “He arrived at practice when we were still running plays and I looked back over and saw all of the kids on the sideline, without prompts, walk over and welcome him to our family. Bobby’s enthusiasm to meet the team was very contagious and everyone loved having him from that point on. The kids wanted nothing more than to give Bobby the game ball after a victory and I believe he motivated us during the game. As soon as the game was over many of our players asked ‘where’s Bobby,’ as they wanted him to be a part of our victory (jumping) jacks, or on that day they became ‘Bobby Jacks.’

“Having Bobby join us for a weekend of fun was supposed to be for him to feel good for that period of time,” said Fitch. “I believe my team probably enjoyed it just as much as Bobby did. We have already invited him back for our next home game on the 19th and his family has said he would be there. We can’t wait to have him back.”

Kyle said this has more special meaning than some will ever know. With such a rare disease, it makes it that much more difficult to spread awareness, which makes it that much more difficult to raise money for research and trials.

“Our hope is that every single day they are getting closer and closer to finding a cure,” said Kyle.

Carmen said Bobby’s Facebook page, called “Bobby’s Buddies,” went from having 170 members to around 400 after the game. And that, in and of itself, is building awareness.

“He was probably the bravest kid I will ever meet in my life,” said Sheffield junior quarterback Adam Higby. “He didn’t talk a lot, but his excitement of just being with us Saturday made us excited to play and motivated us to try that much harder. Personally, it was an honor to have this amazing kid and his family join us for a day and it really taught this team as a whole that there are bigger things in life than football. Mostly I hope that we raise awareness for his disease and find a cure!”

Carmen said she doesn’t want people to feel sorry for Bobby or his family. They want him to live as normal a life as he possibly can. He’s attending kindergarten at Warren Area Elementary Center, and doesn’t live in a shell.

“But deep down they are giving us that extra boost of strength,” said his father.

A boost to help overcome the fear of bumps and bruises.

“No matter how bad a day you’re having, football is not life – there’s things out there that are far more important,” said Ehrgott. “We’re not only making memories for him, but we’re making memories for his parents as well. I give Kyle and Carmen all the credit in the world… And whatever little thing I could possibly do to bring awareness, then that’s my job.”

“It puts things into perspective in life,” said Demko. “I think what Bobby did for this team was create a sense of appreciation for each of them. Appreciation for the things they have. Appreciation for the chance to play football. I think it’s created a cohesiveness that you only find once in a great while.

“As for Bobby,” he said, “I think his smile said it all. What they did for him was nothing short of amazing. It made me, as an alumni, feel so proud.”

The Johnsons say they truly appreciate everything the team and community are doing for them, and how it has made Bobby feel in the short term.

“He says he’s going to be a star,” said Carmen.

“He wants to be a Wolverine.”