When he was just two months old, Jackson Aaron erupted into a violent seizure that lasted about 40 minutes. His parents, Jeff and Karina, were terrified, not knowing what was causing the furious convulsions or how to make them stop. After multiple hospital visits, a litany of tests, and a few dozen more lengthy seizures, Jackson was diagnosed with Dravet Syndrome, an extremely rare condition that is essentially the most sinister form of epilepsy there is.
Dravet causes frequent and prolonged seizures, developmental delays, orthopedic conditions, and often issues with speech. It’s a genetic, lifelong condition that affects roughly one in every 16,000 people and can’t be treated by traditional anti-convulstants used for epilepsy. Jeff estimates that Jackson, now 5, has endured more than 500 seizures in his life, many lasting as long as an hour. So, he’s one tough kid.
It helps when you have some pretty tough genes. Both of Jackson’s parents work for the Chicago Police Department—Jeff a Sergeant and Karina a Detective—but both realize the rigors of their work pale in comparison to the seizures their youngest child fights through each and every week. It sends mom and dad through a flurry of emotions every time they watch their son fight to gain some control over the convulsions, but more than anything, it’s heartbreaking.
“Five-hundred seizures later, it still breaks my heart every time,” Jeff says. “There’s a real feeling of helplessness when you can’t help your child at all and it’s something they’re dealing with on an almost daily basis.”
Earlier this year, Jeff and Karina realized what they could do was raise money and awareness for the Dravet Syndrome Foundation, in hopes that new research could help provide the Aarons and other families with better treatments, and eventually a cure. They raised nearly $10,000 from a Facebook fundraiser this spring, and this September, Jeff will race Ironman Wisconsin in support of the Foundation, raising money from sponsors, friends and family.
Jeff is no newcomer to triathlon. He’s been racing since 2000 and is even the cofounder of the CPD Tri Team, which has grown from just Jeff and his partner in 2005 to more than 100 members today. This will be his sixth Ironman, and his fourth in Madison.
“Everyone keeps asking me why I keep going back to Wisconsin,” he says. “I try to explain that the atmosphere in Madison is really something special. From the swim start, where you have thousands of people along the terrace, to the big hills on the bike when you have people lining the road like the Tour de France; it’s such an energy boost and it’s what has gotten me through that race over the years.”
What got Jeff into Ironman was the most famous father-son duo in the sport’s relatively short history. While training for his first marathon in 1999, he tuned into NBC’s annual broadcast of the Ironman World Championship, where Dick Hoyt pulled, pedaled and pushed his son, Rick, 140.6 miles in the Hawaiian heat. Rick lives with cerebral palsy and could never do a triathlon on his own, but with a little help from his tough-as-nails dad, he’s crossed the finish line of more than 250 triathlons, including six Ironmans.
Jeff was so moved by the Hoyt’s story that he signed up for his first Ironman immediately after finishing his first marathon in New York City that fall. It was largely a selfish decision, he admits; committing oneself to dozens of hours of training per week for months on end is inherently self-indulgent, which is part of what makes the upcoming Ironman in Madison so special.
“Ironman is something you do for yourself—to challenge yourself and make yourself a better person,” Jeff says. “This will be the first one that’s really for someone else. Coming into this one, I have this feeling that I have to get through it no matter what because it’s about Jackson and it’s about Dravet and it’s about something bigger than myself.”
Like the dozens of other Chicagoans gearing up for Ironman Wisconsin (or Ironman Moo, as it’s affectionately known) Jeff’s training hub is the Chicago Lakefront, which he views as both a blessing and a curse. He lives in the St. Ben’s neighborhood, so it’s an easy two-mile jog to the lake for his long runs, and there’s no other place he’d rather do it. For long rides, however, he prefers loading his bike into the car and driving to Waterfall Glen in Lemont, where he’s safe from the wayward beachgoers that make the lakefront a dangerous place for a five-hour ride.
With three Ironman Wisconsin finishes to his credit, Jeff doesn’t need to spend the time to drive up to Madison to prepare for the unique challenges of the race. He knows that it’s more undulating than anything he’ll find around Chicago, and he knows those hills become a whole lot hillier on the second loop of the bike. Plus it’s not like he’s flush with free time. Jeff and Karina have three more kids in the house, and a daughter just starting at Arizona State on an academic scholarship. Not to mention Jackson requires around-the-clock care in case he suffers a seizure, which can come at any time of day and never grant the courtesy of a warning.
It provides Jeff with plenty of perspective when he’s going through the rough patches of a long training day or race. It’s also why, no matter what the day throws at him, he knows he’ll hear Mike Reilly call him an Ironman for a sixth time, and that this finish will mean so much more than the five that came before it.
“There are so many things that we take for granted as a regular, healthy person,” he says. “Jackson just wants to be a regular 5-year-old kid—out running around and playing—but he can’t. Instead it’s me and his mom constantly telling him to slow down because we’re worried about him having a seizure. That’s hard. So when I’m out there, I’m always reminding myself of how lucky I am to be doing what I’m doing. I think about him all the time when I’m training and racing. He’s a huge motivator.”
To learn more about the Dravet Syndrome Foundation, or to donate, please visit dravetfoundation.org