‘Running into roadblocks’: Canadian family fights to get care for daughter with epilepsy | 24CA News

Shana Holloran and Alexander Grant have watched their little one flip blue greater than any dad or mum ever ought to.

Their younger daughter, Charlotte, has epilepsy and recurrently suffers from various kinds of seizures. On day, she has 20 to 50 seizures. On different days, she will have greater than 150.

Charlotte, often known as Charlie, first began having seizures when she was eight to 10 months outdated, however they’ve gotten worse in current months.

“They’re constant,” Holloran mentioned.

The Moncton, N.B., household is elevating cash to hunt remedy for his or her daughter in Toronto, because the provincial health-care system has up to now didn’t discover a treatment that works.

Holloran says Charlotte’s well being circumstances, in addition to the quite a few drugs she takes to regulate her signs, have taken an enormous toll on the younger lady’s life.

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

‘It breaks your heart’

The lack of primary bodily features has been difficult for Charlotte, who by nature is outgoing, inventive, and playful.

The little one turns 5 on Thursday, however can’t have a correct party as a result of she doesn’t perceive that she will’t run round and play like her mates.

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

Charlotte’s well being issues are additionally 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,” mentioned Holloran. “He misses his sister.”

The situation reached a boiling level in May 2023, when docs elevated Charlotte’s treatment, which resulted in an additional deterioration of her motor abilities.

The elevated treatment hasn’t helped with Charlotte’s seizures, and her mother and father say her childhood improvement is regressing. She can now not trip her bike with coaching wheels, and is consistently slurring her phrases and trailing off sentences.

Holloran mentioned they’ve a household physician who’s “great,” however doesn’t have the specialised data to assist with Charlotte’s advanced circumstances.

She has additionally been assigned to a baby neurologist – one of many few in New Brunswick, and is due to this fact “kind of busy” and unable to see Charlotte typically sufficient, Holloran mentioned.

As a outcome, the household is often compelled to take their daughter to the emergency room when her seizures are particularly extreme – however an absence of specialists implies that she isn’t getting the assistance she wants.

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

‘We just keep running into roadblocks’

Earlier this month, the household traveled to Toronto to go to relations. Charlotte had a flare-up, they usually introduced her to The Hospital for Sick Children, often known as SickYoungsters.

Grant was impressed by how shortly they have been in a position to entry care outdoors of their dwelling 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 mentioned. “That’s never happened. Within two-and-a-half hours at the Moncton Hospital, we’re still in the waiting room.”

Unfortunately, the docs couldn’t assist Charlotte long-term and not using a referral and entry to her medical data.

Back in New Brunswick, Charlotte is on a waitlist for a session on the IWK Health Centre in Halifax, and the household sought a referral this week to have the lady handled at SickYoungsters – however they’re getting bored with ready.

Grant mentioned it’s “frustrating” to attend as he watches his daughter endure.

“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 mentioned. “And we just keep running into roadblocks left, right, and centre.”

New Brunswick’s Department of Health didn’t reply to a request for remark by deadline.

Time is of the essence

While they anticipate a referral, the household has began a GoFundMe to boost cash to cowl journey and bills to convey Charlotte to Toronto for remedy. It’s since raised greater than $13,000.

Grant mentioned they’re overwhelmed by the response.

“The generosity from the community, far and wide, it’s unreal,” he mentioned. “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 mentioned it’s irritating to have to depart the province to entry care for his or her daughter.

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

As Charlotte continues to attend for remedy, the household mentioned the lady wants assist as quickly as doable, earlier than her situation worsens much more.

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