By Deron Hamel
A fundraiser takes place this weekend in Everett, Ont. to help 18-year-old Jesse Bolton and his family pay for medication to control his epilepsy.
The fundraiser is being hosted by Paul Hibbert and his family. Since 2013, the Hibbert family has hosted an annual fundraiser in memory of their son who was only 26 when he died of sudden unexpected death in epilepsy (SUDEP) three years ago.
Last year’s fundraiser supported their local epilepsy association, Epilepsy Simcoe County.
What’s unique about this year’s event is that it’s being hosted by a family Bolton has never even met – but with whom he shares a common bond.
Hibbert’s son was also named Jesse, and this coincidence is not lost on Bolton.
“I’ve never even met Paul, but he’s hosting a fundraiser for me – I’m very grateful in every single way, but I am a little overwhelmed (by the coincidence) at the same time,” Bolton tells Voices of Epilepsy.
“He is a super generous person to host the fundraiser for me.”
Bolton says Hibbert read an article published in the Alliston Herald in April about his family’s struggle to get the province to cover his prescription for Zonisamide, an anticonvulsant that has helped him remain seizure-free for the past five years.
The family’s application through the Exceptional Access Program (EAP) to have a portion of the medication’s cost paid for was accepted earlier this year, and Bolton receives the medication through the Trillium Drug Program (TDP).
However, Zonisamide costs $6,300 for a year’s supply, and the family is required to pay a $4,000 deductible.
Bolton says no one should have to pay this much for essential medications.
Before 2010, Bolton was living with uncontrolled seizures. He had a temporal lobe resection surgery that March which stopped his seizures. The surgery combined with taking Zonisamide has kept Bolton seizure-free for the past five years.
And his life has changed dramatically for the better.
“(The surgery and medication) has made an absolutely phenomenal difference in my life,” Bolton says. “I was just going into high school at the time (of the surgery), so I couldn’t have imagined doing four years of high school with uncontrolled seizures.”
The fundraiser is being held Saturday, Aug. 15 at the Royal Canadian Legion in Everett. Tickets are $20. Call 705-435-7989 or e-mail [email protected] for more information.
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