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“Facing obstacles”: Canadian family struggles to get care for epileptic daughter | Globalnews.ca

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Shana Holloran and Alexander Grant have seen their child turn blue more than any parent should.

Their young daughter, Charlotte, suffers from epilepsy and regularly suffers from different types of seizures. On a good day, she has 20 to 50 seizures. On other days, she can have more than 150.

Charlotte, also known as Charlie, started having seizures between eight and ten months old, but they have gotten worse in recent months.

“They’re consistent,” Holloran said.

The family from Moncton, New Brunswick, is raising money to get their daughter treated in Toronto after the provincial health system has so far failed to find an effective cure.

Holloran says Charlotte’s health issues, along with the numerous medications she takes to control her symptoms, have had a huge impact on the young girl’s life.

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“Incontinence, drooling, nausea, unbalanced, unsteady, lack of coordination – she walks into walls, she falls,” she said. “She is losing weight because she can no longer chew her food.”

“It breaks your heart”

The loss of basic bodily functions has been a challenge for Charlotte, who is by nature outgoing, creative and playful.

The child turns five on Thursday, but can’t have a real birthday party because she doesn’t understand that she can’t run and play like her friends.

“Watching her friends do everything she wants to do breaks her heart,” Holloran said through tears. “She says to me and cries, ‘Why aren’t my legs working?’ …It breaks your heart. I wish I had the answers.

Charlotte’s health issues also affect her six-year-old brother Chase.

“I can tell it bothers him, especially how many times we are in the hospital for long periods of time,” Holloran said. “He misses his sister.”

Shana Hollaran and Alexander Grant say their daughter Charlotte, who has epilepsy, isn’t getting the care she needs.

Suzanne Lapointe/World News

The problem reached a boiling point in May 2023, when doctors increased Charlotte’s medications, leading to further deterioration in her motor skills.

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Increasing medications haven’t helped Charlotte combat the seizures, and her parents say her childhood development is in decline. She can no longer ride a bike with training wheels, she constantly has difficulty pronouncing her words and slurring her sentences.

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Holloran said they had a “wonderful” family doctor, but he didn’t have the specialized knowledge needed to help Charlotte.

She has also been assigned to a child neurologist – one of the few in New Brunswick, and is therefore “pretty busy” and unable to see Charlotte often enough, Holloran said.

As a result, the family is often forced to take their daughter to the emergency room when her seizures are particularly severe – but a lack of specialists means she doesn’t get the help she needs.

“We go to the hospital and we leave in worse condition than when we arrived, and they release us anyway,” said Grant, Charlotte’s father.

“We keep coming up against obstacles”

Earlier this month, the family traveled to Toronto to visit relatives. Charlotte had a flare-up and they took her to the Hospital for Sick Children, also known as SickKids.

Grant was impressed by how quickly they were able to access care outside their home province.

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“Two and a half hours after arriving at the emergency room, she was sitting in a room with two neurologists and an epileptologist, all specializing in pediatric neurology and epilepsy,” Grant said. “That never happened. After two and a half hours at the Moncton Hospital, we are still in the waiting room.

Unfortunately, doctors couldn’t help Charlotte long term without a referral and access to her medical records.

Alexander Grant said his daughter’s condition deteriorated as they waited for treatment.

Suzanne Lapointe/World News

Back in New Brunswick, Charlotte is on a waiting list for a consultation at the IWK Health Center in Halifax, and the family this week requested a referral for the girl to be treated at SickKids – but she has had enough ‘to wait for.

Grant said it was “frustrating” to wait while watching his daughter suffer.

“He’s difficult. All we’re doing is trying to provide him with health care. We’re just trying to give him the same life as everyone else,” he said. “And we continue to hitting roadblocks left, right and center.”

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The New Brunswick Department of Health did not respond to a request for comment by deadline.

Hurry up

While waiting for a referral, the family started a GoFundMe to raise money to cover travel costs and expenses needed to bring Charlotte to Toronto for treatment. Since then, more than $13,000 has been raised.

Grant said they were overwhelmed by the response.

“The generosity of the community, everywhere, is unreal,” he said. “Seeing other people care about our daughter, who they have never met, is just overwhelming. “It’s great to be seen, because we’ve been fighting for so long just to be seen.”

Although they are blown away by the response to their fundraiser, Holloran said it was frustrating to have to leave the province to access their daughter’s care.

“New Brunswick is seriously lacking health professionals of all kinds: family doctors, specialists,” she said. “There are so many people in our place.”

As Charlotte continues to wait for treatment, the family said the girl needs help as quickly as possible, before her condition worsens further.

“I’m terrified every day. I don’t like waking up in the morning and seeing the seizures start immediately,” Holloran said. “I know things take time, but time doesn’t seem to be on our side. »



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