Jacob Buchheit was born typical, a happy and healthy baby. But when he was 10-months old, Jacob contracted viral encyphalitis, which is inflammation of the brain.
It resulted in a stroke and Jacob's first seizure, causing him to became paralyzed on one side of his body. He has very limited speech and though he can't read or retain enough memory, he's still cognitively strong and has a smart, funny personality.
Now 21 years old, Jacob has had to endure 13 surgeries and many hospital stays throughout his young life. About four years ago, Jacob came down with hypothermia and was in the hospital for about three months, going between Children's Hospital of Pittsburgh of UPMC and the Children's Institute of Pittsburgh.
"He had gone through a really tough time," said Jacob's mother, Eileen. "He hardly walks, but he had to re-learn the little bit of skill that he had."
It was a devastating experience for Jacob, who became depressed. So his family started searching for ways that they could help Jacob return to his old self.
Turns out, they didn't have to look far.
Jacob has been involved with a children's charity called Variety since the age of 3. Their motto is "helping kids be kids."
"If I was summarizing Variety, I would say it's providing life-changing equipment and experiences to kids with disabilities to live life to the fullest," said Charlie LaVallee, Variety Pittsburgh's Chief Executive Officer.
Through their "Kids on the Go" program, Variety provided funding for Eileen to help adapt her van for Jacob's wheelchair when he became too heavy to carry.
Jacob and his family have also taken part in Variety's "Peak Moments" program his entire life. He has gone trick-or-treating at the annual Halloween Party, hosted and organized by Covestro, visited Santa at the annual Holiday Party, and participated in parades. He also attended their summer camps for two weeks every year until he got sick.
That's when Eileen learned about another initiative from Variety called the "My Bike" program, which had started when LaVallee arrived in 2012.
"When I came, I felt that we needed to find an initiative that would mobilize the community," LaVallee explained. "I honestly did not know the implications and where it was going to go would be so profound when we launched 'My Bike.'"
It's important not to underestimate the power of riding a bike. For kids like Jacob, who can't ride a typical bike, they're often left out and left behind. They're forced to sit on the sidelines and watch their siblings or their friends ride while they cannot. These adaptive bikes from the "My Bike" program, which has Highmark as a founding sponsor, promotes the inclusion that is so important to Variety's mission.
"They can be like any other kid riding a bike," LaVallee said. "Their bike is a little different, but they're still part of it and they're riding up and down just like everybody else."
Eileen thought the adaptive bike would be great exercise for Jacob and could get him up and get him moving. And the first month they had it, there was an event called the Mini Boston Marathon taking place in Boston, Pennsylvania, and LaVallee asked if they would use Jacob's adaptive bike to ride in it for a 5K and help raise awareness for Variety. Eileen and Jacob said yes.
"That was Jacob's first time riding the bike that long and the first time he ever did a 5K, and it just made him into who he is now," Eileen said. "It gave him confidence, self-esteem, friends. We still talk to people we were running with there in the 5K and we've done many 5Ks and raised a lot of money for different charities along the way."
Doing the 5K helped ignite a competitive spirit in Jacob that hadn't been there before, and it helped prepare him for the next opportunity ahead of him.
Jacob has always loved hockey. His room is decorated in black and gold and one wall is completely dedicated to the Penguins. For Christmas, Eileen buys him tickets to bobblehead nights at PPG Paints Arena so he can continue building up his bobblehead collection. And with the help of an adaptive stroller also provided by Variety - which folds up just like umbrella strollers for kids, but is for adults - his brother Evan can take him to those games without having to use the van.
"They call it 'Kick Mom to the Curb Night' and they call it 'Boys' Night Out,'" Eileen said with a laugh. "So they kick me to the curb, they put Jake in the front seat of the car. He gets to play with the radio and then they get the stroller out and put him in it. Their favorite place to take it is Penguins' games."
They've watched hockey together their whole lives, but Eileen never thought she would see them play hockey together. That all changed when one day, Evan, who played club hockey for Pitt, went early to practice and noticed that there were people getting off the ice who had wheelchairs, crutches and prosthetics lined up.
Evan asked around and eventually figured out that they were part of the Mighty Penguins Sled Hockey Team, and that a few times a year, the organization invited potential members to come out, get in a sled and if they like it.
"So we went to one, and it was like oh my gosh, there was no way we were turning back," Eileen said. "Jacob loved it."
Jacob has been playing for the Mighty Penguins for four years now, and part of what makes his experience so special is that he's been doing it with his brother, whom he adores.
Because Jacob is paralyzed on one side, he can't use the two sticks he has to push himself efficiently, but he is permitted through USA Hockey rules to have somebody push him. So Evan went through the certification process and became trained to become Jacob's pusher, and together, they epitomize what Hockey Is For Everyone is all about.
"They are doing this as a journey together," Eileen said. "Jacob's journey is quite the journey, and when you put Evan in the mix, he gets to be a part of it like that. He's always been with him, but when he gets to be involved like this, on this scale, I'm over the moon. I couldn't ever imagine that the two of them could be involved in something like this, a sport like this. It's incredible."
Eileen said that even though Jacob didn't score the first two years, you couldn't tell - "because his smile out there on the ice and just being part of a team, he was never on a team before." And when Jacob did score his first goal, he fell asleep that night holding the game puck.
Now, the goals have been coming in bunches. They recently went to a tournament where Jacob was named MVP because he had the highest point total. They have been traveling all over North America to play sled hockey, stopping in Ohio, Indiana and even Canada.
And when Jacob is at home, he trains using his adaptive bike. They take it on the bike trail through South Side all the way down to Kennywood, where the rollercoaster comes down and Jacob loves hearing people screaming with excitement. Or sometimes, the family will start at Costco and end up at Sandcastle before they go look for eagles.
But it's not just outdoors that Jacob can ride his bike. Variety provides a stationary stand so that kids can ride it all year long. If it's raining or snowing, they can bring the bike inside and just prop up the wheels. Sometimes, even when it's nice out, Jacob will take his bike outside on the deck and just ride it there. It's been crucial in helping keep Jacob's legs conditioned.
"The bike is about the only exercise he gets right now," Eileen said. "If we didn't have it, we might not be able to do sit to stand and transfer, and take the few steps he can take to do things like go to the bathroom."
It's also helped maintain his core, which is important for sled hockey.
"Evan talks about Jacob using it for training for the Pens," LaVallee said. "I thought it was so cool because doesn't every athlete train? It maintains his core. People wouldn't know what does it take to be on a sled? Since Jake can't walk much any longer, he has to build up his core to be able to sit in the sled."
Jacob, the hockey player.
"He is now an athlete that is actively involved in his sport, and he has purpose and fulfillment," LaVallee said. "How cool is that?"
Finally, the communication device provided by Variety has helped Jacob show his personality.
For kids who have communication disorders or are non-verbal, Variety works with speech language pathologists to assess their needs and prescribe a communication application on an iPad to give them a voice at all times to express their thoughts, feelings, wants and needs.
"We've heard over and over again that if you have a child that can't communicate and you're the parent, they're talking to me about their kids that are pounding their fists into their heads because they're so frustrated," LaVallee said. "They can't get anyone to understand or know what they want. That's painful to hear that."
Now, with the communication device, not only can Jacob tell his mother that he's hungry or needs to go to the bathroom - he's been able to make friends.
"He can play hockey and when they're coming back and talking about, 'how about when that guy ran me over on the ice,' he can be part of that conversation because you can type it out or there are images," LaVallee said. "When they were in Canada, Evan sent me a picture of Jake and his teammates and said what's so great about this is that Jake has his own friends."
But with Jacob being the incredible person that he is, he's not only using it for himself - he's using it to help others. LaVallee has asked Jacob to speak at a few public occasions to raise awareness and raise money using the communication device.
"He rides his bike into these places full of confidence. He uses his iPad to tell them a little joke and then gets back to business," Eileen said. "He'll say, 'without this iPad, you wouldn't even know what my personality is like, you wouldn't know anything about me, you wouldn't even look at me.' That's the part I like, because now people are listening to him. He's asking questions and people are answering them. He's having a conversation, which he never had before."
Recently, Jacob was able to have a conversation with former Vice President Joe Biden. Jacob knew that Biden is from Philadelphia and is a big Eagles fan, so he used his communication device to pull up a picture of the team's logo and say, "Congrats on the big win! Go Birds!"
In response, Biden told Jacob that when he landed in Pittsburgh, a stranger approached him and said, "I know you're deeply religious and Catholic, and a Philadelphia Eagles fan, but here in Pittsburgh, we have nuns who make rosary beads in black and gold." This stranger gave Biden a set of them, and in turn, he gave those black and gold rosary beads to Jacob, something that he will always treasure.
Then, Biden told Jacob that he was making a difference. Evan told LaVallee that those words really reached into Jacob's heart and gave him both a deeper understanding and a hope that he too could follow in the footsteps of the Vice President and make a difference, regardless of his disability.
Tonight, the Penguins Foundation and the United Steel Workers teamed up to donate more funds to Variety so that they, along with Highmark, can supply more bikes to kids like Jacob and continue making a difference.
Highmark has contributed over $250,000 to the "My Bike" program since its inception. Leo Gerard, the president of USW, has helped his organization raise $500,000 for adaptive bikes, adaptive strollers and communication devices.
"This is something that we can do that really changes the lives of our members and their families," Gerard said. "I can't think of anything more precious than giving a child and that child's family the freedom that comes with being able to ride a bike or go in a stroller or use a communication device."
It's been absolutely life-changing for Jacob, who will be there for the check presentation. He loves going to public occasions like that because he knows it means that more kids will be getting bikes.
"He got his bike first and then we passed the word around to Jacob's school. Since then, almost every kid that can ride a bike has a bike from Variety," Eileen said. "So Jacob got to be a part of that too. We went to something at Pioneer where some of the kids were getting bikes and they had a bike giveaway at the school. Jacob got to ride his bike as the leader of the parade and then took all the kids that had just gotten new bikes around the school on their bikes. That was pretty incredible."
While Jacob won't be riding his bike onto the ice, he will be riding his sled. After the check presentation, Evan will be pushing him out as one of the Trib Junior Starters for the national anthem as part of Hockey Is For Everyone Night.
"I never thought in a million years this is what I would be doing when he was 21 and he was a year old and we thought his life was over," Eileen said. "Who would have thought? This bike has really opened a lot of opportunities for him to be social, to be recognized, to be a part of something."
Since the "My Bike" program kicked off on Nov. 5, 2012, more than 1,900 bikes have been sponsored for eligible kids, with one bike being $1,800 to sponsor. With the Penguins Foundation and USW teaming up to sponsor 10 more, LaVallee hopes that one day, they'll see more kids like Jacob getting into sleds.
"We've been the launching pad together as a team," LaVallee said. "The Pens doing another 10, it's truly life-changing. Ten kids that the Pens did in honor of Leo is going to change 10 kids' lives. Maybe in a few years those kids will be on the Mighty Pens going to Canada, making new friends."