A new Bloomington-based nonprofit for people living with epilepsy and their families will host its first major fundraiser this month, Maddie’s Bowl for HOPE.
Set for 1-3 p.m., Sunday, Sept. 21, at Pheasant Lanes in Bloomington, organizers want the public to join them in their family-friendly event with bowling, raffles, refreshments, plus educational tables about epilepsy, a condition marked by recurrent seizures.
Launched about a year ago, this nonprofit grew out of a desire to find epilepsy support closer to home for young Maddie Quinn, now 10-years-old, and a fifth grader at Heyworth Elementary School.
“There is just not a lot of epilepsy support in our community," said Christie Goodman, Maddie's stepmother [better known as bonus Mom in the Quinn household], who leads the group Maddie’s HOPE [Helping Other People with Epilepsy].
"We do a lot of traveling for Maddie's medical side of things, and the last thing we want to do is keep traveling 2 1/2 hours for support systems and things like that, so we wanted to bring it here in our community," she said, noting Maddie has multiple doctor's visits this month alone, in Lurie's Children Clinic in Chicago.
Creating support systems for individuals and families living with epilepsy is the focus of Maddie's HOPE.
Goodman emphasizes this is an all-ages group, and that its not just for children with epilepsy, "We're just trying to make sure that everyone feels comfortable and supported in our community," she said.
Health challenges started early for Heyworth girl
Not long after Maddie’s first birthday, her parents Dionna Bachman and Steven Quinn, learned she had epilepsy. The case proved complex, and a few years later she was diagnosed with a rare, severe, form of epilepsy that causes hard-to-control seizures.
In Maddie's first decade of life, she's had to overcome the challenges of her condition. It’s meant having a VNS port to reduce seizure frequency, and wearing a helmet to minimize injury from seizure-related falls. Epilepsy treatment-caused liver failure even landed her in St. Louis' Barnes Children's Hospital in 2023. But she's rallied, and now is "back to her strong-willed self," according to Goodman.
Maddie has a large supportive family, including several siblings. She splits her time between the homes of her parents Dionna Bachman and Oz Toledo in Heyworth, and Steven Quinn and Goodman in Bloomington. Even with a big family rallying behind her, sometimes she needed more:
“Maddie just felt so secluded. She didn’t know anybody else who had epilepsy," said Goodman. "So, we wanted to find people that she can talk to, and she can feel comfortable around."
That's where the idea for Maddie's HOPE emerged.
It's likely you know someone with epilepsy
One in 26 people will develop epilepsy during their lifetime, while one in 10 people will experience a seizure, according to Aaron Lohnes, services coordinator with the Epilepsy Action Network [EAN], a nonprofit that's worked closely with the Quinn family for several years.
The Illinois group provides support to individuals with epilepsy in about 60 Illinois counties. That includes helping with insurance and transportation issues, as well as mental well-being, for families facing epilepsy.
Among its programs is a monthly epilepsy support group in Peoria, said Lohnes, adding the group may bring one to Bloomington later this fall.
EAN is one group Maddie's BOWL for Hope will support. That's partly a nod to the group's summer camp. Each year, Maddie attends the epilepsy camp at the Easter Seals site at Lake Bloomington.
"She absolutely loves that," said Goodman. "They do so much, and its her very favorite thing. We couldn't feel more comfortable with her there," she said.
Lohnes said the June camp makes activities like archery, boating, ziplines and climbing walls accessible to the school-age children with epilepsy. On-site staff includes a nurse, and a neurologist specializing in epilepsy.
Maddie's also been involved with planning the Sept. 21 fundraiser, and she just started bowling this year, so she's eager to take part too, her stepmother said.
"She loves delivering flyers, knocking on doors, telling people about her event, and her nonprofit. She's got a huge heart. This little girl is ready to get out there and support her epilepsy community," said Goodman.
Maddie's HOPE boosts community outreach
Maddie’s HOPE is grassroots at this point, and operates out of the Quinn home. Last summer, the group organized an epilepsy awareness walk in Bloomington, drawing about 100 participants. That started the local networking: "We met about six other families with epilepsy warriors in them," said Goodman.
Since then, Maddie's HOPE has boosted its outreach — setting up information tables at area events, and marching in several area parades. Earlier this month, the group was seen with a colorful float along the Bloomington Labor Day Parade's route.
"We hear people yell, 'Hey, we got epilepsy in our family'," Goodman said. "That's what we want to hear. We want people to see — and if you see us, find us on Facebook and reach out to us. We'd love to connect with you."
The nonprofit's next steps are focused on building its support groups.
“We are going to try to find more private places [for the group meetings], because not a lot of people are comfortable talking about what they are going through in public.
These will be for people living with disability — to find peers. But they also welcome family members.
"I'm sure Maddie's Mom and Dad would've loved to have had somebody to just say 'I went through that. I did that. It's going to be better, it's going to get better. We can help you figure this out.' That's kind of where we [Maddie's Hope] want to go," said Goodman.
Maddie’s Bowl for Hope details
When: 1 to 3 p.m., Sunday, Sept. 21
Where: Pheasant Lanes, Bloomington
Tickets: $25 per bowler. This is an all-ages event, and open to the public. Players can sign up as an individual, or as a four-person team. Buy tickets at the fundraiser's EventBrite page.
What's behind the event: This benefits Maddie’s HOPE, a new Bloomington-based nonprofit creating a support network for McLean County area residents living with epilepsy; as well as The Epilepsy Action Network, an Illinois-based nonprofit offering support to epilepsy families in more than 60 Illinois counties.
Bowling and more: Lanes will be purple, the official color of epilepsy awareness, and no strobe lights will be used to avoid seizure risk. Besides bowling, a silent auction, and raffles are planned. Tables also will be staffed from the Epilepsy Action Network, Lifelong Access https://lifelongaccess.org/, and SOAR https://www.bloomingtonparks.org/programs/soar/general.
