Kurstin’s story: A family, a diagnosis and getting by

North Ridgeville

By Michael Fitzpatrick

It started on a December night in 2009, with what Sarah Wilhelm and her husband, John, thought was a case of the hiccups for their then-8-month-old daughter Kurstin. But what the couple at first thought were benign gasps for breath turned into a full-blown seizure, and a parent’s worst nightmare.

“When we woke up she was actually convulsing from head to toe,” Sarah said, recounting what was the first of hundreds of seizures Kurstin, now 4, has experienced. “Her eyes rolled back in her head and she was completely unresponsive. She was lifeless and turned blue.”

John also recalls the night. “I didn’t know what was going on. We were looking at her and going, ‘Is that a seizure?’ We had no idea what a seizure was. It scared us pretty good. I just remember a whole lot of confusion,” he said.

From that date until July of last year, Kurstin was medically classified as an epileptic, experiencing anywhere from three to nine seizures a year. Oh, and there was the Mother’s Day a couple of years ago during which the family spent the day at the emergency room and Kurstin suffered what are called a cluster of seizures that amounted to 11 in a four-hour span.

But other than that, Kurstin, the middle of the couple’s three children, seemed to be developing like any normal kid. She liked to play with dolls, swim and play in a bouncy house.

But last summer the grand mal seizures began occurring every day, sometimes several times a day.

Sarah and John, after countless spinal taps, MRIs, EEGs and finally genetic testing, now know just what caused seizures in Kurstin. Dr. Elaine Willey, “a world renowned thought leader on epilepsy” according to her bio on the website of Cleveland Clinic where she practices as a neurologist diagnosed her with Dravet Syndrome, attributing it to a mutation of the SCNA1A gene. The disease affects 1 in 20,000 people, and it’s a life-altering diagnosis, according to Sarah.

The seizures scramble one’s brain and wreck havoc with speech and motor skills. Memories and tasks learned are often wiped clean from the brains of those who are afflicted. Seizures are controlled with expensive medications, and even then they can still cause brain damage, and in the most severe cases, SUDEP, sudden unexplained death in epilepsy.

Since October, Kurstin has spent 16 days and nights in a hospital room at the Cleveland Clinic over three separate visits. One day in the hospital typically costs $8,000, Sarah said. Kurstin now takes 17 pills a day to control the condition.

It’s put a tremendous strain on the Wilhelms’ finances, Sarah said. Bill collectors ring the phone off the hook and scold her for being irresponsible.

“We literally pay what we can,” Sarah said. “They still call me and still harass me and tell to get my priorities straight,” Sarah said.

So, with the medical bills mounting, Sarah and John are turning to the public for help. The couple is putting on a fundraiser on March 22 in hopes of raising enough money to purchase a seizure response dog and also pay for medical expenses.

The fundraiser is scheduled from 6:30 to 8:30 p.m. at Razzles, 27128 Bagley Road in Olmsted Falls. Tickets are $25, which include all the pizza, pop and beer one can drink. There will also be a raffle, 50-50 drawing and door prizes.

The dogs, which take two years to train, are not cheap, with a price tag of $5,000. But having one would make life safer for Kurstin, her mother explained.

“It can break her fall if she has a seizure and we’re not in the room,” Sarah said.

A seizure response dog can also learn to use a specially equipped phone that can call 911 in the event Kurstin suffers a seizure and Sarah or another family member isn’t around. The same phone can also push out a text to Sarah that will let her know that Kurstin is in trouble.

It would also provide a little peace of mind for Sarah.

“I live in a three-level house. There are times when I’m downstairs putting in a load of laundry and I hear her make a sound that sounds like the start of a seizure, and I fly up the stairs and find she is just making a noise at the TV,” Sarah explained.

Willey is also an advocate of the dogs.

“Some dogs will learn how to respond when a child is having a seizure, a seizure response dog, and there are some dogs that appear to know when a seizure is going to occur, which is amazing, because humans don’t know how to do that very well,” Willey said.

Willey pointed out that when children are young they’ll always be attended by an adult, but having a seizure response dog can help the child gain independence as he or she ages.

“Having a pet that can partner with the parent to keep the child safe, that’s the goal of all this. In addition, the dog can often often provide companionship and friendship for the child. I’d love for there to be response dogs for every child who has uncontrolled epilepsy, but I know that’s not the case,” Willey said.

What it’s like for the family

The first night Kurstin suffered a seizure, Sarah remembered it was “terrifying.”

“I had never seen anything like that and didn’t know what was going on with her.”

It didn’t get any easier for Sarah over the next several years. She recalled breaking down each and every time Kurstin began to convulse uncontrollably.

“I would cry every time she had one,” Sarah said. “Now I stay calm and talk her through it.”

So do Kurstin’s siblings, Ian, 10, and Olivia, 3.

“They know to rub her arm, rub her side and tell her everything will be OK,” Sarah said.

John, 29, said the worst thing for him is when he’s at work and his phone rings and it’s Sarah on the other end telling him Kurstin has gone into a seizure.

“I just kind of have to sit there at work because there is nothing I can do. I would say for me that’s the most difficult part,” John said.

The hellish events can last up to eight minutes, Sarah said, and Kurstin has broken teeth and bitten through her lip during them.

In recent months as the seizures have become more frequent, Sarah has become more calm when they take over her daughter’s body.

“Something just came over me and said, ‘This is the way it’s going to be,’” Sarah said.

Dravet Syndrome is having a clear effect on her daughter’s development, Sarah said.

“She has really bad speech issues. She was supposed to go into kindergarten next year, but she’s so delayed they are keeping her back in preschool one more year,” Sarah said. She lauds the teachers at the Early Childhood Learning Center at Fields-Sweet, where Kurstin attends school. But she acknowledges that learning is an uphill battle for her daughter. After a seizure it’s as if she loses all the knowledge she’s gained.

“It likes she takes 10 steps back,” Sarah said.

On a recent Sunday afternoon inside the family’s tidy three-level home in North Ridgeville when first meeting Kurstin it’s hard to believe that anything is wrong with her. Dressed a gray T-shirt designed for her fundraiser and a floral print skirt, she appears to be the picture of health. She dashes to the kitchen table to look at some cupcakes delivered to the house and talks with her 3-year old sister Olivia. She scolds a visitor for wearing boots into the house.

“No boots,” she says, before Sarah tells her the guest has been granted a special exemption.

“People ask us all the time if they are twins,” Sarah, 31, said of her two daughters.

Camera-shy, Kurstin at first refuses to allow her picture to be taken, hiding behind mother.

It is only when one of the family’s two dogs, Bella, emerges that Kurstin lets down her guard, scooping up the pooch and then beaming for the camera.

The future

At this point, Sarah is just hoping doctors have hit on the proper mixture of medications to control her daughter’s seizures, and holds out hope she can acquire a seizure dog to help keep Kurstin safe. Sarah knows it’s unlikely Kurstin will ever have a “normal life.”

“It’s devastating for me. I feel when she’s having seizures I’m dying inside,” Sarah said.

Sarah is two things: realistic and an organizer. She knows that there is a real possibility that Kurstin could fall victim to SUDEP, although Willey downplays the the chances.

“We are always aware of it, but we don’t dwell on it just as when we go out and get in a car we know we can get in a crash but we try not to think about it every day. I think with Dravet or any epilepsy the risk is there, but it’s fortunately going to be low,” Willey said.

Willey said families that have a member suffering from Dravet Syndrome “tend do what they have to do” and don’t dwell on the worst-case scenario. “But it certainly is a difficult journey.”

As for being organized, Sarah can recite of the names of the myriad medicines (Depakote, Topamax, Biotin Forte, Levocarnitine and an adult multivitamin to prevent hair loss from the Depakote) her daughter takes and why. Her house is immaculate, even though it is populated with three kids all the under age of 10. How she’s gone about organizing the benefit also points to her attention to detail as she recites a couple of the many sponsors.

“We just got Joe Firment (a car dealer in Avon) and 24-7 Fitness,” to help, she says. She points out that the cupcakes on the kitchen table were made by Three Girls Cupcake Shoppe, which has created a special chocolate cupcake with purple frosting it is selling, with a portion of the revenue going to the fundraiser.

Sarah’s also had her own health issues. She’s undergone two open heart surgeries, the most recent being after complaining about chest pains and doctors discovered that her right coronary artery had wrapped itself around the left side of her heart. At the time a family member jokingly told her and John that if the couple didn’t have bad luck, they’d have no luck.

At one point when Sarah was feeling powerless against Kurstin’s illness, she decided to organize a Facebook page for her daughter. It’s called “Prayers4Kurstin” and has more than 5,000 followers. This is all good. But there is the reality of Dravet that hovers like the 5,000-pound gorilla in the room. Sarah never comes out and directly says it, but there are always hints of that sad fact. In the logo she designed for the benefit, it’s there. The logo is a pink heart. Inside the heart is a purple ribbon to represent epilepsy awareness and along the top of the heart are four tearlike shapes, which represent the lives lost and tears shed for those with Dravet Syndrome, she said. So maybe that’s why she doesn’t flinch when she’s asked how she deals with the future.

“It’s hard. It’s very hard. Because it’s one of those of things that every time she goes into a seizure you can’t help (but) wonder … what happens (during) her next one she goes into a coma or just doesn’t stop seizing. A lot of times if they go into a coma they don’t come out, then you are stuck with one option, and don’t want to make that option, ever,” Sarah said, her voice catching ever so slightly on “ever.” “ I don’t want to have to make that decision ever.”

When: March 22, 6:30-8:30 p.m.Where: Razzles, 27128 Bagley RoadPrice: $25, to purchase tickets call440-309-7267Web:  www.eventbrite.com/e/prayers-4-kurstin-tickets-10637626427?aff=efbevent

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