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Family reaches fundraising goal for epilepsy dog

November 24, 2018

Christmas came two months early for Heidi Stevens and her family.

About three weeks ago, the Stevens family reached their fundraising goal of $28,000 for a seizure-response dog for their 19-year-old son, Josef.

“We were just on cloud nine. Still are,” Heidi Stevens said. “I think we had to tell (Josef) twice, like, ‘What? Really?’ ”

Stevens and her husband, Rod, are grateful to the hundreds of people who made it possible to reach the goal, whether they bought T-shirts, donated money or helped the family put on benefit events.

“The fact that he (Josef) has met his goal is thanks to so many gracious people and their generosity,” she said. “We just knew that that’s what the good Lord wanted.”

Reaching the goal is a significant milestone in the family’s journey ever since Josef was diagnosed with epilepsy about five years ago.

His condition causes grand mal seizures, which involves a loss of consciousness and violent muscle contractions, when he sees flashing lights or experiences a change in lighting. Other factors like stress, new routines or changes in sleep schedule also may affect the occurrence of seizures.

At the time, he wanted to keep his diagnosis mostly hidden. But that changed last year, when he was a senior at Lutheran High Northeast — he and his family decided a seizure dog would be needed as his seizure medications were becoming less effective.

Seizure dogs provide assistance to an owner having a seizure by accomplishing an impressive number of actions, including supporting their head, retrieving medications and cellphones, rolling them onto their side and more. But Heidi Stevens said their insurance wouldn’t cover the costs of getting a seizure dog.

She reached out to the Chelsea Hutchison Foundation, which serves individuals and families with epilepsy, and through that organization got connected with Domesti-PUPS, a Lincoln-based organization that provides therapy dogs, service dogs and rescue dogs.

Despite sometimes-long waiting lists, the Stevenses were able to reserve a spot for a puppy that Josef Stevens will receive June 1 in Lincoln. He and the dog then undergo a two-week training course involving 10-hour days, Heidi Stevens said.

The dog helps reduce fears of the unknown for him and his parents, she said. He’s now a first-year at Concordia University in Seward studying psychology, and it’s harder for his parents to be available when a seizure happens.

“Quality of life, we think, has already blossomed,” she said. “(It provides) a lot more independence.”

But it wasn’t always effortless for Josef Stevens to be open about his diagnosis. “It’s gotten easier,” he said since going public about having epilepsy.

Heidi Stevens describes the process as a leap of faith.

“He took our hand and took that leap of faith … we did a lot of praying about it, we didn’t feel like we had any other choice,” she said.

Heidi Stevens said she hopes their advocacy can also help destigmatize the condition, which about 3 million U.S. adults have, according to the advocacy group Epilepsy Foundation.

Even so, there are misconceptions about epilepsy, Heidi Stevens said.

Widespread stigmas were part of the family’s reason for delaying the process of getting a seizure dog. She remembers one of his neurologists being somewhat ambivalent about the idea when it was first brought up.

“(The) neurologist said, ‘(Getting a dog) is OK, but all your friends will know’ — it’s hard to know how to react to that,” she said. “We hope with more awareness that (for) the … next person new to the diagnosis, that that comment won’t be made.”

For the Stevens family, advocacy makes a significant difference in their daily lives. As Josef Stevens gets used to living in a new town, having local hospital staff who understand epilepsy and his unique condition can mean getting the treatment he needs without paying extra for tests he doesn’t need. They now have to pay for college, too, Heidi Stevens said.

There’s another benefit to being open about his diagnosis, she said. It allows him to connect with others he wouldn’t have normally reached.

After starting the fundraising process, he met a girl from Pierce who shared that she was also epileptic. It was Josef Stevens’ first conversation with someone with a similar experience.

“She’s on our Christmas card list today,” Heidi Stevens said. “That (network) is what’s really developed.”

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