‘Running into roadblocks’: N.B. family fights to get care for daughter with epilepsy | Globalnews.ca

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

Their young daughter, Charlotte, has 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, first started having seizures when she was eight to 10 months old, but they’ve gotten worse in recent months.

“They’re constant,” Holloran said.

The Moncton, N.B., family is raising money to seek treatment for their daughter in Toronto, as the provincial health-care system has so far failed to find a remedy that works.

Holloran says Charlotte’s health conditions, as well as the numerous medications she takes to control her symptoms, have taken a huge toll on the young girl’s life.

“Incontinence, drooling, nausea, off-balance, unstable, uncoordinated – she’s walking into walls, she’s falling,” she said. “She’s losing weight because she can’t chew her food anymore.”

‘It breaks your heart’

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

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

“Watching her friends do all the things she wants to do is breaking her heart,” Holloran said, tearing up. “She tells me, cries, ‘Why don’t my legs work?’ … It breaks your heart. I wish I had the answers.”

Charlotte’s health problems are also affecting her six-year-old brother, Chase.

“I can tell it bothers him, especially the amount of times we’re in the hospital for extended periods of time,” said Holloran. “He misses his sister.”

The issue reached a boiling point in May 2023, when doctors increased Charlotte’s medication, which resulted in a further deterioration of her motor skills.

The increased medication hasn’t helped with Charlotte’s seizures, and her parents say her childhood development is regressing. She can no longer ride her bike with training wheels, and is constantly slurring her words and trailing off sentences.

Holloran said they have a family doctor who is “great,” but doesn’t have the specialized knowledge to help with Charlotte’s complex conditions.

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

As a result, the family is frequently forced to take their daughter to the emergency room when her seizures are especially severe – but a lack of specialists means that she isn’t getting the help she needs.

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

‘We just keep running into roadblocks’

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

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

“Within two-and-a-half hours of arriving into 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’s never happened. Within two-and-a-half hours at the Moncton Hospital, we’re still in the waiting room.”

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

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

Grant said it’s “frustrating” to wait as he watches his daughter suffer.

“It’s difficult. All we’re doing is trying to get her health care. We’re just trying to get her the same life everyone else has,” he said. “And we just keep running into roadblocks left, right, and centre.”

New Brunswick’s Department 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 a GoFundMe to raise money to cover travel and expenses to bring Charlotte to Toronto for treatment. It’s since raised more than $13,000.

Grant said they’re overwhelmed by the response.

“The generosity from the community, far and wide, it’s unreal,” he said. “Seeing other people care about our daughter, that they’ve never met, is just overwhelming. “It feels great to be seen, because we’ve been fighting for so long just to be seen.”

While they’re blown away by the response to their fundraiser, Holloran said it’s frustrating to have to leave the province to access care for their daughter.

“New Brunswick is seriously lacking health-care professionals of every kind: family doctors, specialists,” she said. “There’s so many people in our shoes.”

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

“I’m terrified 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.”