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Michael, Logan, Erin and Ava Pitre, larboard to right, accept been adopting bags of dollars for appropriate pillows acclimated by bodies with epilepsy. Ava, 8, who was diagnosed with the acoustic ataxia back she was two years old, has accomplished seizures every night for six years. (Submitted by Erin Pitre – angel credit)
Imagine activity to bed every night affliction from seizures so agitated that you can almost sleep.
That has been eight-year-old Ava Pitre’s absoluteness back she was two years old, back she was diagnosed with epilepsy. Her mother, Erin Pitre, says it’s been a attempt for the ancestors for six years.
“We had to move because the blueprint of our added abode aloof didn’t assignment and there would be times area she would abatement bottomward the stairs.”
Ava has not let that stop her from active activity to the fullest, adding: “I like allowance bodies who accept attack like me.”
She was already able an anti-suffocation pillow from a bounded family, so over the accomplished four years, her ancestors led a fundraising accomplishment that has aloft over $20,000 to buy pillows for added families.
The pillows are not accustomed as medical accessories in Canada.
Epilepsy Southwestern Ontario says while it can’t acclaim the pillows as a medical device, they can advice allay anxiety.
Erin says the pillow Ava uses has accustomed the ancestors accord of mind. The architecture involves three layers of cream with holes advised to accommodate able airflow, in the accident Ava finds herself lying face bottomward because of a seizure.
Ava and her mother Erin appearance Ava’s anti-suffocation pillow and explain how the architecture helps in the accident of a seizure. While not accustomed as medical accessories in Canada, the Pitres say they’ve accustomed the ancestors accord of mind.(CBC News)
Anti-suffocation pillows and epilepsy
The pillows are bogus by British aggregation Beddy-bye Safe, but they’ve garnered alloyed reaction, with British alms SUDEP Action advertence application them is a claimed choice.
Epilepsy Ontario says a accord amid accent and seizures does abide with accent acting as a activate for seizures and authoritative it added acceptable for addition to acquaintance seizures.
Erin says endless medical tests and hospital visits accept provided no advice in agreement of compassionate the antecedent of Ava’s epilepsy, which has fabricated analysis difficult.
The alms Attack Canada says the account is alien in bisected of bodies with the acoustic disorder. The alignment additionally begin that for over 30 per cent of bodies with epilepsy, medication is ineffective.
It’s estimated attack affects 1 in 100 Canadians.
Ava is in that 30 per cent group. Erin says her babe is biologic aggressive and there isn’t abundant bigoted allotment into attack analysis or treatment.
In a account to CBC News, the Ontario Ministry of Health and Long-Term Care says that from 2020 to 2021, it has spent $16.7 actor on attack anaplasty and accompanying treatment, up from $14.7 actor in 2018-2019.
Until added added able treatments are found, the Pitre ancestors will abide their pillow fundraising.
“These pillows are over $200 anniversary … abnormally if you’re a ancestors diagnosed with this is not article they should accept to anguish about,” says Erin.
Community ambulatory together
Kristy Raymond has accepted the ancestors back Ava was diagnosed with epilepsy.
Raymond runs a block decorating businesses, amid several businesses that accept helped Ava’s ancestors with fundraising.
“She’s so amazing … She’s the cutest little affair ever.”
Raymond says the Pitre family’s adeptness to affected affliction has been inspiring.
“Even through aggregate they’re activity through … the hawkeye nights, they’re still accessible to beat the apple calm and they’re consistently afraid together. They’re an amazing family.”
The Pitres achievement to abide fundraising while bringing added acquaintance to epilepsy.
“It makes me feel blessed because I apperceive I accept a admiring community,” says Ava.
Ava and added associates of the Pitre ancestors achievement to abide fundraising while adopting acquaintance about epilepsy. (Erin Pitre)
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