Couple continues battle to find comfort for daughter

-A A +A
By Stephanie Jessie

 MOUNT WASHINGTON—At first glance, Leighanne Hastie looks like a regular 3-year-old.

“Day to day, if you look at Leighanne, she looks like a normal little girl,” her mom, Heather, said. “She goes to gymnastics class on Mondays and she likes to go to her Bible class. She doesn’t look like a sick kid or one that has a disability.”

The only difference comes in the form of a neurological disorder called epilepsy, which causes the toddler to have daily seizures.

In November 2014, Leighanne began losing interest in activities that used to get her excited, like going to the playground. 

A week later, she started turning blue around her mouth for short periods of time.

Tests were run and everything came back clear.

Leighanne became very sick in January 2015 with pneumonia, RSV, a double ear infection and several other illnesses all at once.

After six months of tests and studies, Leighanne’s condition was confirmed.

The seizures happen quick, usually with only a 15-second warning, Heather said.

Leighanne’s mouth starts to turn bright blue and she stares right through whatever is in front of her. So far, none of the attacks have lasted over a minute. The average, Heather said, is 20 seconds.

After the attack is over, Leighanne has two modes: fatigue or rage.

“Sometimes she will fall asleep right after from exhaustion and sleep anywhere from 10 minutes to several hours,” Heather said. “Or she gets angry and throws a tantrum that can be dangerous for those around.”

The tantrums can be described as a normal toddler’s tantrum, multiplied by 100, Heather said.

After 45 minutes or so, the anger usually ceases and a long nap follows.

“It’s like a surge of adrenaline that goes through her body,” Heather said. “Her body doesn’t know how to direct that amount of adrenaline that fast so it either goes into really tired or really angry and then she’ll fall asleep.”

Leighanne often wakes up clueless to what occurred, but understands that something happened.

“That’s hard,” Heather said.

While medication has taken the seizures down from several a day to a couple a week, finding the right one hasn’t been easy.

Previous medications either had no side effects but caused a severe allergic reaction or caused hallucinations, making Leighanne believe people were trying to hurt her and, in return, making the rage-reaction more common.

Recently, the family made the switch to a third type that can cause episodes of anger. At this point, it hasn’t been detected although it is still too soon to tell.

Because the attacks happen with such short notice and can result in violent behavior, Leighanne’s parents have chosen to keep her out of public school for now, saying it isn’t fair to expect the teacher to have all eyes on their daughter at all times when there are 25 other students in the room that need attention, too.

“She was not allowed to go to preschool this year,” Heather said. “She wants to go to school. She doesn’t know she’s been pulled out of things.”

Currently, Heather stays at home with Leighanne while her husband, Jarrod, is in the Army Reserves and goes to school.

At night, Heather watched her daughter sleep until her husband comes homes around 2 or 3 in the morning and can take her post.

The fear of something happening while their daughter sleeps stems from a doctor’s warning of Sudden Unexplained Death in Epilepsy (SUDEP), the rare case that a child can die while asleep from a seizure.

“I’m happy they told us, but you don’t sleep after that,” Heather said. 

Even though the chances are that Leighanne will always have epilepsy (although there have been cases where children outgrow the symptoms), there is a solution the family has found to bring a sense of normalcy to their lives.

“She had a seizure [while at her grandparents’ house] one day and she started to go into the rage,” Heather said. “My parents have a dog and a cat…We brought the animals over and she just went from the rage where we couldn’t do anything right to a trance-like state where she just patted the dog over and over.”

The family bought Lucy, an Australian shepherd, in hopes of achieving a similar reaction at home, but it didn’t quite do the job.

“Your body puts off a scent when you have a seizure,” she explained. “Any dog can smell it and, when a normal dog smells the scent, it tends to make them go wild as far as running all around.”

The wild behavior has alerted the family in the past when Leighanne was having a seizure, but Lucy doesn’t know what to do with the scent as far as helping Leighanne during the situation.

Through much research, the family found “4 Paws for Ability,” an organization based out of Ohio that breeds and trains service dogs for people in need.

With the addition of the service dog, Heather and Jarrod will be able to sleep again. Leighanne will be given the chance to go to school like a normal child. She will gain independence she doesn’t have now.

With the assistance of the service dog, there isn’t anywhere she cannot go with it by her side.

However, that kind of help comes at a cost.

The price to train a dog runs anywhere from $22,000 to $40,000.

“We are registered as volunteers for ‘4 Paws for Ability,’” Heather said. “We have to raise $15,000 for the organization and, in return for helping them, we will be given a dog.”

The family is not buying the dog or paying for the training. The arrangement states that the family helps the organization by raising the money and the organization rewards them by gifting the dog in the end.

Once the money is raised, the family will be placed into class 18 months later to receive the dog.

The golden doodles and golden labs are born and raised at the facility. Several different dogs will be trained with Leighanne in mind in order to ensure the best match possible for the pair.

The family was instructed to send in a movie of their day-to-day activities so the dog can be properly trained to suit their needs. For example, Heather said that the family visits the Louisville Zoo often. This lets the trainers know that the dog needs to be well adapted to being around other animals.

Due to Leighanne’s young age, her parents will be trained as handlers for the dog until she is old enough to understand what to do.

“It’s a week-long process,” Heather said. “We travel up to Ohio and spend the week learning how to become a handler and take care of it.”

The family’s goal is to have Leighanne a new best friend by the time she starts kindergarten in two years.

Unlike regular service dogs, seizure assistance dogs are always working since a seizure can happen at any time. Kids and adults are encouraged to interact with the animal, which also promotes friendships since many children who experience seizures tend to be isolated in playground-type settings. 

So far, the family has raised over $7,000 to go to 4 Paws for Ability through T-shirt sales, Krispy Kreme fundraisers and personal donations (among other things.)

Upcoming fundraisers include a golf scramble and a Scentsy sale.

To make a donation to 4 Paws for Ability, visit www.4pawsforability.org/leighanne-hastie or by searching “4 Paws for Leighanne” on Facebook.