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‘Encounters roadblocks’: NB family struggles to care for daughter with epilepsy | Globalnews.ca

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

Her young daughter Charlotte suffers from epilepsy and regularly suffers various 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, first started having seizures when she was eight to 10 months old, but they got worse in recent months.

“They’re consistent,” Holloran said.

The family from Moncton, N.B., is raising money to get their daughter treated in Toronto because the province’s health system has yet to find an effective treatment.

Holloran says Charlotte’s medical condition, as well as the numerous medications she takes to control her symptoms, have severely impacted the young girl’s life.

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“Incontinence, drooling, nausea, balance problems, unstable, uncoordinated – she runs 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 was challenging for Charlotte, who is naturally outgoing, creative and playful.

The child turns five on Thursday but can’t have a proper birthday party because he doesn’t understand that he can’t run around and play like his friends.

“Seeing her friends do all the things she wants to do breaks her heart,” Holloran said, breaking down in tears. “She tells me and screams, ‘Why don’t my legs work?’ …It breaks your heart. I wish I had the answers.”

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

“I can tell it bothers him, especially the frequency with which 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 suffers from epilepsy, is not receiving the care she needs.

Suzanne Lapointe/Global News

The problem came to a head in May 2023 when doctors increased Charlotte’s medication, causing her motor skills to deteriorate further.

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The increased medication has not helped Charlotte’s seizures and her parents say her child development is regressing. She can no longer ride a bike with training wheels, constantly speaks slurred and drowns in sentences.

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Holloran said they had a GP who was “great” but did not have the expertise to help with Charlotte’s complex medical conditions.

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

Therefore, the family is often forced to take their daughter to the emergency room when she has particularly severe seizures – but due to a lack of specialists, she does not receive the help she needs.

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

“We keep coming across obstacles”

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

Grant was impressed by how quickly they gained access to medical care outside of their home province.

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“Two and a half hours after she arrived at the emergency room, she was sitting in a room with two neurologists and an epileptologist, all of whom specialized in pediatric neurology and epilepsy,” Grant said. “This has never happened before. Within two and a half hours at Moncton Hospital, we’re still in the waiting room.”

Unfortunately, without a referral and access to her medical records, doctors were unable to help Charlotte long-term.

Alexander Grant said his daughter’s condition was deteriorating as they waited for care.

Suzanne Lapointe/Global News

Back in New Brunswick, Charlotte is on the waiting list for a consultation at the IWK Health Center in Halifax, and the family applied for a referral this week to have the girl treated at SickKids – but they’re growing tired of waiting.

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

“It’s difficult. We’re just trying to get her health care. We’re just trying to give her the same life that everyone else has,” he said. “And we keep hitting roadblocks left, right and center. “

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

Time is of the essence

While they wait for a referral, the family has started one GoFundMe to raise money to cover travel and expenses to get 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 far and wide is unreal,” he said. “To see other people caring for our daughter who they have never met is just overwhelming. “It feels great to be seen because we have been fighting to be seen for so long.”

Although they are overwhelmed by the response to their fundraiser, Holloran said it is frustrating having to leave the province to access medical care for her daughter.

“New Brunswick has a serious shortage of health care professionals of all types: primary care physicians and specialists,” she said. “There are so many people in our situation.”

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

“I am terribly afraid every day. I don’t like waking up in the morning and watching the seizures start right away,” Holloran said. “I know things take time, but time doesn’t seem to be on our side.”

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