July 29, 2014

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North Ridgeville family struggles with daughter’s rare epilepsy, mounting medical bills

Kurstin Wilhelm, 4, has to swallow this handful of pills every day to regulate her medical conditions. BRUCE BISHOP/CHRONICLE

Kurstin Wilhelm, 4, has to swallow this handful of pills every day to regulate her medical conditions. BRUCE BISHOP/CHRONICLE

NORTH RIDGEVILLE — As a family dog barked in the background and her young daughters played and repeatedly called for their mom’s attention, Sarah Wilhelm’s words may have sounded like the mantra of any young family.

“Our days are never dull,” she said with a smile as Kurstin, 4, asked a visitor his name, and then proceeded to tell him about Bella, the family dog. “He was from Santa.”

As parents of three children, Sarah and John Wilhelm have a tougher road to travel than many.

Kurstin, who will turn 5 on Easter, lives a life filled with uncertainty due to a form of epilepsy known as SCNIA Gene Mutation, Dravet Syndrome, a rarer form of epilepsy that can lead to behavioral and developmental delays, as well as increased risk of Sudden Unexplained Death in Epilepsy.

“We play a what-if game every day,” Sarah Wilhelm, 31, said, explaining that Kurstin may go for days without any seizures only to have multiple seizures come without warning.

Kurstin’s serious condition is at odds with the smiling, engaging child who easily interacts with her younger sister, Olivia, 3, and the two dogs and a cat.

“We’ve been told she’ll never be seizure-free, and she’ll never be able to be left alone,” Wilhelm said as she watcher her daughter playing a video game on her iPad.

“I look at her and think she’ll never be able to drive herself to the mall like other kids,” Wilhelm said.

The costs of medication, coupled with multiple hospital stays and appointments with doctors, therapists and others have left the family weighted with mounting bills.

The family has insurance, but it doesn’t come close to covering Kurstin’s specialized care during visits and admissions to Cleveland Clinic that saw her hospitalized for 16 days since Jan. 1.

This is why a two-hour “Prayers 4 Kurstin” benefit will be 6:30 to 8:30 p.m. March 22 at Razzles the Fun Place, 27128 Bagley Road in Olmsted Falls.

The $25-per-person fundraiser is sponsored by Unite This City, a Cleveland-based company Sarah works for at home as she cares for Kurstin on a full-time basis.

The organization offers discounts to area restaurants and businesses via a smartphone app, and it also works to support charitable causes.

The fundraiser is designed to help the family cover the $5,000 cost of getting a specially trained seizure response service dog through a Florida organization.

Such animals are able to detect the onset of seizures in children and alert family members with barks or other behaviors. Such animals also are trained to lie next to a child having a seizure to minimize risks of injury.

John, 28, works in the billing department of Cenveo, a Cleveland business envelope producer.

Her husband’s days are as long as those of his wife, with work lasting 6 a.m. to 4:30 p.m., followed by three hours of accounting classes at Lorain County Community College, which he hopes to parlay into a better job.

“We’re trying,” said Sarah, who also has overcome two heart surgeries.

The family has received help from family and friends, specialists caring for Kurstin at the Cleveland Clinic and her preschool teachers at the Early Childhood Learning Center at Fields-Sweet School.

And they’ve had lots of online support with 6,000 followers on the family’s Facebook page.

Despite having to devote so much time to Kurstin, the family tries to maintain as much normalcy for everyone, including Olivia, 3, and Ian, 10, who recently asked his mom “‘why can’t we just be normal” and take a vacation, Sarah said.

Expenses and Kurstin’s never-certain status make such a venture nearly impossible, save for outings paid for by other family members, Sarah said.

Contact Steve Fogarty at 329-7146 or sfogarty@chroniclet.com.

“Prayers 4 Kurstin”

  • WHAT: Benefit 6:30 to 8:30 p.m. March 22 at Razzles the Fun Place, 27128 Bagley Road, Olmsted Falls.
  • WHERE: Razzles. Take I-480 east to the Stearns Road exit in North Olmsted. Go 1½ miles south on Stearns Road to the third traffic light (Bagley Road). Turn right. Razzles is within sight of the intersection.
  • TICKETS: $25 per person. Contact Sarah Wilhelm at: s.wilhelm@yahoo.com
  • or (440) 309-7267.
  • DONATIONS: Visit https://www.eventbrite.com/e/prayers~4~kurstin~tickets~10637626427. Donations also may be mailed to: Kurstin Wilhelm, P.O. Box 39594, North Ridgeville, OH 44039.

  • Joe Smith

    Good luck little lady!

  • Sue

    Isn’t it Razzles, not Razzies???

  • ekwaykway

    Prayers sent their way for all!

  • Paul Facinelli

    In every other developed country of the world — EVERY OTHER ONE — this brave family wouldn’t have to deal with a mounting financial burden. And it’s not like they have a choice. This is their precious little girl. Only in the United States, among developed nations, is health care a commodity like mascara or toaster ovens, something from which to glean profits … large profits … obscene profits. And the upshot of this money-grubbing by the health care establishment is that Americans die younger then they should. We are 51st in the world in life expectancy, according to the CIA’s Factbook. There are 50 other nations where we could expect to live longer. The World Health Organization ranks the U.S. 37th in overall health care. We have very poor cancer survival rates and our rate of infant mortality is appalling. We are No. 1 in a couple of areas: We’re No. 1 in health care costs worldwide, by far, and within our borders, health care costs are the No. 1 cause of personal bankruptcy. Conclusion: We spend a lot and our outcomes are miserable. Meanwhile, doctors, hospitals and, most especially, insurance companies bathe in cash. It’s time — beyond time, actually — for the United States to cut out the middleman, the insurance companies, and adopt a single-payer system, like those in place everywhere in the developed world where people and their health are considered more important than profits for the insatiably greedy.

    • bdid.d

      America helping Americans doesn’t look as good as sending millions in aid to other countries… Now if this little girl would have built up her military personnel and arsenal… then America might be willing to help. Send donations directly to the family, it’s clear nobody else is going to help them unless we do. Poor baby, she didn’t ask for this, what a shame she has to live with it.

  • Paul Facinelli

    According to Steve’s story, the family has insurance, but I’m wondering what kind. If it’s traditional, they won’t have enough coverage. What I hope, and what I would urge the family to do, is to go to healthcare.gov and review the options within the Affordable Care Act. A couple of things I do know: Little Kurstin cannot be denied coverage under the ACA because of a pre-existing condition, and there is no lifetime cap on benefits, something the insurance companies have done in the past to, of course, increase their profits. Moreover, coverage under the ACA is highly likely to be cheaper than what the family has now. I hope they look into it.