Henry’s pals have fought epilepsy alongside him for more than six years
There hasn’t always been a Henry’s HEROES, but Henry has always had his heroes.
Henry Iida’s first supporters were, of course, his parents, but a pack of new recruits came along when he was in third grade.
It was then, about seven years ago, that Iida had a seizure at school.
“His friends showed up at the house with postcards, candy, Legos,” his mother, Nancy, said. “When he had another one, they were upset and said, ‘We have to fix Henry.’”
Building on that sentiment, the Henry’s HEROES Foundation was born to raise funds and awareness to fight epilepsy, Nancy said.
The majority of the work for Henry’s HEREOS — an acronym for Henry’s Educating Research and Outreach to End epilepsy Soon — has always been accomplished by his classmates, who have organized and executed a handful of fundraisers for the past six years.
“They fill out an application each year (to be a HERO) and put their heads together for different ideas on what we can do,” she said. “The kids spearhead it. A couple of team leaders run the event and I just help get a permit or whatever. That’s how we roll.”
Jennifer Wiitala, a rising New Trier High School junior with Henry, has been with HEROES for six years.
At first, she was inspired by the cause and just wanted to help. As she became more involved, Wiitala started to lead and became one of Henry’s best friends.
“I do it because it is enjoyable and helps the world,” she said. “I’ve gotten to see texts come in on how helpful it is with other foundations, like Danny Did (Foundation).”
Nancy Iida said Henry’s HEROES donates funds to a number of charities that fund epilepsy research and awareness. One of the most common is the Danny Did Foundation, a local group that works to protect children with epilepsy by donating safety items to prevent seizure-related deaths.
Most recently, Henry’s HEROES greeted the community at the Winnetka Sidewalk Sale outside of Nancy Iida’s brand new studio, 964 Green Bay Road, called heART’s for HEROES.
Nancy began painting when Henry was diagnosed with epilepsy, and to complement the regular fundraisers, Nancy sold her art and donated the proceeds to epilepsy research.
With Henry’s heroic classmates on the cusp of college, Nancy said the studio is an evolution for the nonprofit.
“It’s a nice transition,” she said. “The kids are all older — juniors and seniors who will be graduating and leaving. We will still have the studio as a way to spread awareness of epilepsy.”
To Nancy and Henry, the awareness piece has always been as important as the funding piece.
Epilepsy can be a subtle ailment that does not manifest in seizures often or ever. For others, like Henry, seizures can happen without warning.
“We try to raise awareness by speaking out that we have epilepsy. We don’t cover it up,” she said. “A lot of people who have it don’t want people to know. Sometimes you get away with that until you have one in public.”
Henry did not have the choice to hide his epilepsy after more than one public seizure.
The younger members of Henry’s HEROES, however, do see well past his disease.
“It’s cool because all the years since I met Henry I’ve never known him as someone who has epilepsy,” Wiitala said. “He’s a good friend to me. I don’t associate epilepsy with his personality.”
And maybe one day epilepsy won’t be a part of Henry’s story.
Organizations like Henry’s HEROES fight for an end to epilepsy, to help individuals like Henry grow out of it.
As of June, Henry is celebrating two years free of seizures — and he isn’t celebrating alone.
He never has.
“They are his biggest supporters,” Nancy said of the heroes. “Understanding epilepsy and what it can do to the brain is our biggest goal, but once the kids found out what it was doing to Henry they wanted nothing to do but support him. He has 80 brothers and sisters walking around looking out for him.”
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Joe Coughlin is a co-founder and the editor in chief of The Record. He leads investigative reporting and reports on anything else needed. Joe has been recognized for his investigative reporting and sports reporting, feature writing and photojournalism. Follow Joe on Twitter @joec2319