A week later, her family finally had answers to years of developmental delays with a life-changing diagnosis, subcortical band heterotopia, a rare birth defect that presents itself in the form of intellectual disability and epilepsy.
Kayla is 14 years old now, an eighth-grader at Jonesborough Middle School, and will be starting high school at David Crockett next year. But her seizures have only gotten worse – earlier this year, Kayla spent four days in the hospital after she had more than 200 seizures in one night, her parents Susan and Kevin Gergich said. Her diagnosis isn’t something that she’ll have for the rest of her life.
Because of her seizures, Kayla can’t play outside or in her room by herself, she can’t walk for long periods of time and is sensitive to extreme heat. Medication helps a little bit, and she underwent surgery to implant a vagus nerve stimulator, a device used to treat severe epilepsy among other conditions, according to Mayo Clinic.
“There are things that a lot of other families take for granted but we can’t do because we don’t know if she’s having a seizure or not,” Susan said. “We just have to have that constant supervision.
“When we’re out in public on vacation or at school, at her age, she can be a little more anxious about it. She’s more self-aware of people looking and staring. I think having somebody that’s with you all the time, a four-legged companion, to provide support and comfort for her as well when we’re out in public is important.”
Even with the medication and treatment, Kayla still suffers from about three to five seizures a day, her parents estimate. They decided to look into getting Kayla a service dog that will help her with day-to-day life as well as serving as a seizure alert dog.
It can cost up to $60,000 to train a service dog, but through a nonprofit organization called Paws 4 Ability, the family will contribute about $17,000 to Kayla’s service dog. To help raise the money, they’ve began a communitywide campaign to collect shoes and sell them through an organization called Funds to Orgs.
How you can help:
So far, Jonesborough Middle School jumped on board with the drive, in addition to Ridgeview Elementary, Boones Creek Middle School, Lamar School and Asbury, in addition to nine businesses throughout the community.
Anyone can take their gently used shoes, any style and any size, to one of the nine drop-off locations in Johnson City and Kingsport through Nov. 30.
|Current “4 Paws for Kayla” drop-off points
|Fantatics 101 in the Mall at Johnson City
||2011 N. Roan St., Johnson City
||302 Buffalo St., Suite 100, Johnson City
|Texas Roadhouse, Johnson City
||1808 N Roan St., Johnson City
|Texas Roadhouse, Kingsport
||1221 E. Stone Drive, Kingsport
||2111 N. Roan St., Johnson City
||905 Chase Drive, Suite 110, Johnson City
|Lady Fit Studio
||3317 Wayfield Drive, Unit #3, Johnson City
|The Arc of Washington County
||110 E. Mountcastle Drive, #1, Johnson City
||2901 E. Stone Drive, Kingsport
Susan said she is hoping to collect about 500 bags of shoes throughout the two-month drive. Five days in, Susan estimated Kayla’s school alone has filled about 10 bags of shoes, while employees at Fleet Feet had started on their second bag of donated shoes last week.
Texas Roadhouse, 1808 N. Roan St., will donate 10 percent of their sales on Oct. 15 to the cause.
The family has also set up a funding page through mightycause.com for monetary donations. That fundraiser has raised almost $6,000 so far.
What happens next?
After the funds are in place, it will take the Gergiches a couple of years before they get a service dog. Paws 4 Ability specializes in service training for kids with conditions like diabetes, autism and seizures, but the training will take a couple of years.
The family will save clothes Kayla wears when she’s having a seizure to help the dog to be able to detect her episodes through scent. Kayla and her family will travel to the training facility in Ohio for a 12-week training course and to develop the bond with the dog.
When Kayla is about to have a seizure, the dog will bark or paw at her to let her know to lay down and prepare for the episode.
In addition to seizure alert, the dog will also help Kayla with tasks like opening doors or crossing the street as well as giving her some independence and comfort.
The family has established their fundraising campaign at mightycause.com/story/Qw2xaf and will also be updating their followers on Facebook at www.facebook.com/4-Paws-for-Kayla-323157151789872. Anyone who is interested in becoming a drop-off location can contact Kayla’s parents through their Facebook page or by emailing Susan at firstname.lastname@example.org
“We want the community to be in on this journey as much as they can with us,” Susan said.