Local nonprofit seeks to assist those dealing with epilepsy-related issues
Writer / Jon Shoulders
Photographer / Jamie Sangar
Many people are familiar with the frustration that can result from an insurance provider’s refusal to cover certain medical services, devices or medications. In the case of April and Justin Krowel’s two-year-old daughter Aubrie, who suffers from an extremely rare, lifelong form of epilepsy known as Dravet syndrome, such refusals can be life threatening.
In February of 2016, Aubrie had her first seizure at just eight months old, alerting the Geist-based Krowels to her condition, which can manifest in the form of febrile and non-febrile seizures and include developmental problems. During the ensuing months, April spent hour after hour on the phone figuring out what her insurance plan would cover, and learning the reasoning – or lack thereof – behind many of her policy details.
“There’s a really large gap between what insurance will typically cover and what a neurologist or other medical professional will say that you need,” April says. “It’s something that I never thought of before, and that realization was a big shocker for me.”
According to statistics posted on the American Epilepsy Society’s official website, one in 26 people will develop a form of epilepsy or recurring seizures at some point in their lifetime. After joining an online support group for families and individuals dealing with epilepsy and its attendant insurance challenges, the Krowels realized the scope of the problem and felt compelled to form a nonprofit business that could financially assist families in their shoes.
“I read a posting by a father who had a daughter having really awful seizures and a medication issue with his insurance, and, following an insurance decision, she ended up in the hospital in a coma,” says April, who completed her Ph.D. in counseling psychology at Ball State University in July. “That was the last straw for me. I said to my husband, ‘We’re doing this now.’ We’ve always wanted to do some sort of non-profit – we’re both veterans, so we wanted to do a nonprofit for veterans for a long time, then this happened with our daughter and we realized that this is our mission now.”
The result is Briezy’s Bunch, a 501(c)(3) nonprofit organization the Krowels named in honor of Aubrie’s nickname, and through which they plan to offer donation-based financial support for epilepsy-related treatments, services and equipment not covered through insurance plans. In May, the Krowels launched the Briezy’s Bunch official website, which includes information about how to volunteer with the organization, a donation page and an online store.
“If there’s a teenager who has seizures that have been catastrophic, and now they’re developmentally delayed and they have gait problems, then perhaps they need an adaptive stroller but insurance won’t cover it because it’s not a wheelchair,” April says. “Those can be $1,500 to $2,000 for a decent one. So, for a family that doesn’t have the means, and insurance won’t cover it but the neurologist is saying it would be helpful, we want to swoop in and pay that for them and help them out.”
The Briezy’s Bunch website includes an Assistance page with an email address where those interested in receiving financial help can reach out to Krowel and her staff to receive an application. Required materials include a signed application, a liability waiver, documentation of an insurance denial and a letter from a neurologist or other medical professional recommending the service or device needed for the patient.
“You can donate directly on the site, and the P.O. Box address is on the site too to donate that way,” April says. ”We also have a GoFundMe site where there are tiered gifts for donations.”