Team Julia Jellybean walks to promote epilepsy awareness
A Duluth family has found a way to give back to the organization that has supported them throughout a difficult period.
When she was 2 years old, Julia Rennquist was hospitalized for a week for frequent seizures. At first, JP and Misty Rennquist, Julia's parents, were given a diagnosis of a concussion and sent home. But Julia's seizures grew more severe and began to occur every three minutes. These focal seizures, seizures that affect only one portion of the brain, clustered into a large seizure that lasted several hours.
"We just wanted her seizures to stop and there was nothing we could do to help them. Then the doctors came back with their diagnosis of epilepsy and we really didn't know much about it," Misty said.
The Rennquists found a resource for information and guidance by calling a number on a pamphlet for the Epilepsy Foundation of Minnesota given to them by a doctor. While Julia was still in the hospital, local representative Lisa Peterson visited the Rennquists to provide information, support and comfort.
"You know, you feel so powerless when your kid is sick," Misty said. "It was good to have some resources to put our energy into."
One of the projects the Rennquists focused on that year was the Epilepsy Foundation annual fundraiser walk, then called "Stroll for Epilepsy." Misty and JP reached out to friends and family to create a team of about 30 walkers. The team is called "Julia Jelly Bean" in honor of Julia's first and middle name "Julia Jean."
"Julia Jean, Julia Jelly Bean wasn't much of a stretch and it was catchy and cute," Misty said.
Creating the team, Misty said, helped educate friends and family members on Julia's latest diagnosis and helped Misty feel more in control.
"It felt like we were taking back some control over the situation that had changed our whole family," she said. "And it's always important, to us, to bring more funds into epilepsy research. There have been a lot of technological advances and we hope to see more."
The family team will join 3,500 walkers in five communities at the annual walk this year on Aug. 11.
Another reason the team walks is because the family appreciates the information they gained from the foundation.
"For years, there's been so much misinformation, fear and superstition around seizures, so it's nice to clarify things," JP said. "And they do things like put up posters about epilepsy in Julia's preschool so that her teachers and staff understand how to work with her condition."
Julia's sister Maria, 13, was inspired to do a science fair project about epilepsy last year.
"I learned that it's actually pretty common and there are a lot of famous people with it, like Prince," Maria said.
Julia's epilepsy is genetic and not a condition that she will grow out of as she matures, according to Misty. However, when she's older, she might be eligible for a surgery that could help eliminate the condition, but not until her brain is further developed. For now, her epilepsy is controlled by daily medication, which has eliminated the focal seizures for the most part.
"She's had one or two breakthrough seizures, which have manifested as severe head pain, but overall she's been seizure-free since her last birthday," Misty said.
Julia is now 4 years old and, according to her siblings, fearless and imaginative.
"She's not afraid of anything. Which can be scary for us because we're pretty protective of her," said Julia's sister Grace, 17. "She's always pretending something."
And as her father JP said, "Epilepsy is one thing that's part of her life. It's not something that defines her. It's not embarrassing or bad, it's just one part of her."
The Rise Above Seizures walk will take place on Thursday, Aug. 11, at 6:30 p.m. at the Park Point Pavillion. To register or donate, visit www.epilepsyfoundationmn.org and look for the walk or contact firstname.lastname@example.org.