When Reiko Donato’s daughter was diagnosed with a rare genetic disorder, it changed everything. Well, almost everything. Despite doctor’s visits, surgeries and the stress of being a new parent, one thing always remained the same: Reiko loved to run.
“With so many things out of control in my life, it gave me a sense of control,” says Reiko.
Her daughter, Alex, was only seven months old when she had a major seizure that sent her to the ER. Just before her first birthday, she was diagnosed with Tuberous Sclerosis Complex (TSC), a rare disorder that causes tumors to grow in the brain, eyes, lungs, kidneys and heart. TSC affects over 50,000 people in the U.S., and is the most common cause for autism and epilepsy -- both of which affect Reiko’s daughter.
Being a new parent is enough to send anyone’s life into chaos, let alone a serious and rare diagnosis. Little was known about TSC at the time, and so Reiko soon found herself acting as her daughter’s advocate, shuttling between doctors’ appointments, surgeries and MRIs.
Today, Alex is 19, and through careful monitoring and treatment, her condition is stable. She and Reiko still spend a considerable amount of time in and out of the doctor’s office.
And through it all, Reiko has kept on running.
So when a friend recommended she check out a local indoor triathlon, she thought, why not? Reiko entered her first triathlon at age 50, and to her surprise, she won in her age group. Then she entered another, and then another.
It wasn’t long before Reiko found herself entering the most rigorous of triathlons: the IRONMAN, which consists of a 2.4 mile swim followed by a 112 mile bike ride and topped off with a full-length, 26.2-mile marathon. After placing fourth in her age group in her first IRONMAN in Chattanooga, it was official -- Reiko was hooked.
“We joke in the triathlon community about ‘drinking the Kool-Aid,’” says Reiko. “From the outside it may look a little crazy, some of the things we do. But you get hooked! Crazy becomes the norm. Everyone’s doing it.”
It may sound impossibly hard -- and oftentimes it is. At the age of 60, Reiko must maintain a careful balance between rest and training: 10 to 12 hours of training during the week, with one day for rest. And on race days, there’s weather to consider, nutrition, equipment, pacing and bodily stress.
Races are a problem-solving challenge as much as a physical one -- and that’s exactly what draws Reiko to the race.
“IRONMAN days are a lot like life,” she says. “My life didn’t turn out the way I expected it to, with my daughter’s challenges. It threw me a curveball. Race day is the same way. Maybe someone kicks your goggles off in the water, or you have crazy weather, or you drop your nutrition bottle on your bike. But you have to accept it and figure out how to deal with it. That’s what really makes me want to do the race.”
But despite the challenges IRONMAN presents, Reiko mostly talks about her friends in the tight-knit triathlon community, and how much fun she has.
“I always have a great time racing, no matter what kind of day I have,” says Reiko. “It’s so different from my role as a special needs mom, or from my background as a market researcher. It’s good for your body, and I’ve found a social network group too.”
Over the last ten years, Reiko has competed in IRONMAN triathlons around the globe, including the World Championship, where she earned a finisher’s medal. This year, she celebrated turning 60 by competing in IRONMAN Chattanooga on her birthday . . . and won. This qualifies her for her the 2019 World Championship race in Kailua-Kona, Hawaii.
In the end, it all comes back down to racing for her daughter. Reiko sits on the board of the TS Alliance, and has used her races as a platform to raise over $250,000 for tuberous sclerosis research.
“My daughter keeps me going on hard days,” she says. “She doesn’t know her life any other way. She’s got annual brain and abdominal MRIs to make sure tumors aren’t growing. She has seizures, medication every single day, a lot of doctors’ appointments, and is still doing occupational and speech therapy. But she takes it all in stride and doesn’t complain.”
“If Alex can do it, I can do it. I am doing this for Alex.”
To make a donation to help find the cure for Tuberous Sclerosis, visit the the TS Alliance website.
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