The United Nations marks the International Day of Persons with Disabilities on December 3. This International Day of Observance began in 1992 to promote an understanding of disability issues and to highlight the need for progress to better serve people who have a disability.
At Gillette Children’s, we advocate for all people diagnosed with a disability to receive excellent health care, educational opportunities, and equality. We’re committed to creating an equitable, anti-racist and inclusive environment where all patients, families and staff are welcomed and valued.
Our advocacy efforts include sharing the stories of some of our patient families and their efforts to ensure all children can be included and live a full life.
The Bergeman family is grateful to the medical experts at Gillette for their work to allow their son, Jeffrey, to become an active participant in endurance sports.
As he looked up at the hundreds of stairs in front of him, Jordan Bergeman briefly wondered if he had made a mistake. He and his son Jeffrey had gone out on a hike at a State Park, gotten a little ambitious, and now faced a seemingly insurmountable obstacle.
“Jeffrey has quadriplegic cerebral palsy, and so he has an adaptive chair for rougher terrain,” Jordan says. “His chair and stairs don’t exactly go together. I thought about turning around, but Jeffrey was having none of that.”
Jeffrey wanted to go.
It’s how they had gotten into the situation in the first place. The park had an accessible trail, but as Jordan recounts, there wasn’t a lot to see there. So they took the more difficult trail, crossed a bridge, and found their way to the aforementioned mountain of stairs.
They weren’t done yet; Jeffrey wanted to go.
On May 24, 2008, Jeffrey was 22 months old.
Spunky and bright for his age, he was already putting together sentences with a vocabulary that was expanding by the day. He was coming right along.
“Jeffrey was in his room playing. He couldn’t have been more than 10 feet away from me,” Jordan says. “All of a sudden I just got this sense that something was wrong. I looked at Jeffrey, and he was down on the ground. He looked like he had the wind knocked out of him.”
Jeffrey had gone into cardiac arrest. Paramedics quickly responded, and Jeffrey was eventually flown to a nearby hospital. His heart arrested two more times.
“The medical staff told us that Jeffrey had gone somewhere between eight and 20 minutes without oxygen to his brain, and that the resulting damage would likely be irreversible,” Jordan says. “It was devastating for us to hear that. In a moment that little boy we knew had been snatched away.”
Stronger Than We Knew
Now nine years later, the Bergemans have come a long way.
“It’s odd to think about it now,” Jordan recalls. “Learning how to care for Jeffrey was a huge adjustment, but eventually you begin to figure things out. Bit by bit you start venturing out into the world, and even though some things have changed, you’re still a family. ”
Jeffrey has two siblings, and like many families, the Bergemans occasionally struggle to find activities they can all do together. But after Jeffrey had an intrathecal baclofen (ITB) pump implanted at Gillette Children’s, the activities he could participate in greatly expanded.
It wasn’t long before a solution presented itself.
Who I Run For
Jeffrey was matched through Who I Run 4, an organization that helps recreational athletes volunteer to run for individuals who cannot due to physical or developmental reasons.
“Jeffrey was matched with a woman from northern Virginia,” Jordan says. “Suddenly, all these medals are arriving for him from the races she’s doing. It gets you thinking: If this person across the country is motivated to do these things for our child, maybe I should too.”
When Jeffrey’s mom, Jessica Bergeman, began running with their son, it was only a matter of time.
“She was definitely egging me on a little bit, so I decided to run one night while I was traveling for work. It did not go well,” Jordan says. “I realized it was going to take some work. I started taking spin classes at our local club, and in October 2016 I did my first 5K run with Jeffrey. Things really took off from there.”
Marathon Times Two
Spurred on by their success, Jeffrey and his parents next completed a half-marathon.
Then they traveled to Virginia to participate in the Marine Corps Marathon with Jeffrey’s Who I Run 4 sponsor, Kareen. There, Jeffrey—with his mom and sponsor by his side—completed his very first marathon. Then Jordan had an idea.
“There’s this group called the Marathon Maniacs. To become part of the group, you have to complete two marathons within 16 days of each other,” Jordan says. “The Richmond marathon was coming up in several days, so I figured, how cool would it be if Jeffrey became a marathon maniac?”
Remember, Jordan had only been running for several months. He’d completed a half-marathon but had never attempted anything longer than that. As it so often goes, he decided to leave the decision up to Jeffrey.
“Jeffrey is nonverbal, but we have yes-no communication with him. Like any 10-year-old he doesn’t always answer us right away,” Jordan says. “But when I asked him if he wanted to do the marathon, it was an immediate yes. Then I asked him ‘If he thought I’d survive.’ He said yes, but he definitely paused in a way that didn’t totally inspire confidence.”
How We Got to Now
Jeffrey and his dad completed the Richmond marathon on November 12, 2016. Everyone survived, Jeffrey became a marathon maniac, and for the Bergeman family it was a revelatory experience.
“When you interact with Jeffrey, it’s clear that he’s got a lot more to say than he can actually say,” Jordan says. “While we’re out at a race he can get very vocal and it’s amazing to see how people respond to him. When everyone is cheering for him and having a good time, he gets to be included in a way that doesn’t always happen in day-to-day life. The thing about inclusion is, it works.”
The View From the Top
The Bergeman family has even bigger plans for this year. They recently had an adaptive bike and trailer donated to them from a local shop, which will allow Jeffrey to compete in his first triathlon.
When asked about why he wants Jeffrey to participate in these events, Jordan’s answer is relatively succinct:
It’s not really that complicated. As a parent, it’s your responsibility to take your child out in the world, expose them to things and see what they find meaningful. For Jeffrey, that can be harder to do, but we’ve never let traditional boundaries contain us.
When we were out on that hike last summer and came upon those hundreds of stairs, it would’ve been easy to quit. But Jeffrey wouldn’t, so I couldn’t.
We figured, why not? Let’s just do it. We turned his chair around, and step by step, we took him to the top. When we got there, we found an observatory tower, so we went to the top of that too.
Main point is, Jeffrey was smiling and laughing the whole way. He loved it.
He doesn’t always get to do the same things as everyone else, but we’re going to make sure he gets to do as much as he possibly can, and no less.
This story was originally posted in 2017. Since then, Jeffrey, Jordan and the Bergeman family have competed in numerous races and marathons.
Jeffrey's sister, Susan, also took up cross-country running. She and Jeffrey compete as a duo.
While they are allowed to run, their times are not counted and other rules exist that restrict their participation. The Bergemans say that additional changes need to be made to allow for greater accessibility for individuals who have disabilities going forward. Read more about that here.
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