'She's a trooper': How this Windsor girl is fighting to support others with epilepsy
Ava Pitre, 8, who's had the neurological disorder since age 2, and her family raise funds and awareness
Imagine going to bed every night suffering from seizures so violent that you can barely sleep.
That has been eight-year-old Ava Pitre's reality since she was two years old, when she was diagnosed with epilepsy. Her mother, Erin Pitre, says it's been a struggle for the family for six years.
"We had to move because the layout of our other house just didn't work and there would be times where she would fall down the stairs."
Ava has not let that stop her from living life to the fullest, adding: "I like helping people who have epilepsy like me."
She was once gifted an anti-suffocation pillow from a local family, so over the past four years, her family led a fundraising effort that has raised over $20,000 to buy pillows for other families.
The pillows are not approved as medical devices in Canada.
Epilepsy Southwestern Ontario says while it can't recommend the pillows as a medical device, they can help alleviate anxiety.
Erin says the pillow Ava uses has given the family peace of mind. The design involves three layers of foam with holes intended to provide proper airflow, in the event Ava finds herself lying face down because of a seizure.
Anti-suffocation pillows and epilepsy
The pillows are manufactured by British company Sleep Safe, but they've garnered mixed reaction, with British charity SUDEP Action stating using them is a personal choice.
Epilepsy Ontario says a relationship between stress and seizures does exist with stress acting as a trigger for seizures and making it more likely for someone to experience seizures.
Erin says countless medical tests and hospital visits have provided no information in terms of understanding the source of Ava's epilepsy, which has made treatment difficult.
The charity Epilepsy Canada says the cause is unknown in half of people with the neurological disorder. The organization also found that for over 30 per cent of people with epilepsy, medication is ineffective.
It's estimated epilepsy affects 1 in 100 Canadians.
Ava is in that 30 per cent group. Erin says her daughter is drug resistant and there isn't enough provincial funding into epilepsy research or treatment.
In a statement to CBC News, the Ontario Ministry of Health and Long-Term Care says that from 2020 to 2021, it has spent $16.7 million on epilepsy surgery and related treatment, up from $14.7 million in 2018-2019.
Until other more effective treatments are found, the Pitre family will continue their pillow fundraising.
"These pillows are over $200 each ... especially if you're a family diagnosed with this is not something they should have to worry about," says Erin.
Community rallying together
Kristy Raymond has known the family since Ava was diagnosed with epilepsy.
Raymond runs a cake decorating businesses, among several businesses that have helped Ava's family with fundraising.
"She's so amazing ... She's the cutest little thing ever."
Raymond says the Pitre family's ability to overcome adversity has been inspiring.
"Even through everything they're going through ... the sleepless nights, they're still ready to conquer the world together and they're always sticking together. They're an amazing family."
The Pitres hope to continue fundraising while bringing more awareness to epilepsy.
"It makes me feel happy because I know I have a supportive community," says Ava.
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