‘If we don’t speak up for her, who’s going to?’

By Gemma Good

Although Amelie McCormack only turns 11 next week, she has already overcome more adversity than most people face in a lifetime.

The Cootehill girl suffers seizures without warning, she has had several blood transfusions from the day she was born, she has endured epileptic fits, sclerosis, pneumonia and the loss of her mobility.

Despite all of this, Amelie is still smiling. As she sits in her wheelchair specifically moulded to her frame watching Ben and Holly’s Little Kingdom, she gives a sideward glance and a winning smile every so often.

A fighter if ever there was one. As her mother Pamela explains how a spinal fusion procedure means she may never walk again, Amelie becomes visibly agitated. She refuses to give in to her condition.

Rett Syndrome is a rare genetic disorder affecting one in every 10,000 girls. It affects brain development, leading to the deterioration of motor skills and speech.

Pamela explained this spinal operation was meant to take place last June, but was cancelled due to the pandemic. This had a huge impact on Amelie’s health, with her spine once at 45 degrees going to 95 degrees before the surgery finally took place in January.

“She went from nearly straight to almost like a banana,” her mother explained.

“Last June would have been optimum time because the decline in her back from September to December was massive.”

The McCormack family are desperate to source a vehicle that will accommodate their daughter. With VAT and VRT covered by the Government, the family must cover €36,000 of the total cost. They have been in contact with four dealerships that supply modified cars.

“We’ve been hassling them but we just couldn’t get a car within our price range,” Pamela explained of their struggles.

The family have set up a Go Fund Me Page to help them raise the funds, which to date has raised over €5,000 of a €13,000 goal.

She detailed “the procedure” to travel with Amelie at the moment.

The family have a booster seat in the back of their car as Amelie has outgrown her specialised car seat. Her husband, Stephen, or one her daughters, Scarlett or Grace, help to lift Amelia out of her wheelchair and into the seat.

“I’m not fit to hold her up, I can’t lift her at all,” said Pamela, explaining she has had arthritis since she was aged just 13 years.

As Amelie’s full time carer, she dreads the coming weeks when her husband and daughters will return to work and school, meaning she will have to transport Amelie on her own.

“How am I going to get to hospital appointments?” she asked desperately, with various appointments scheduled all over the country.

Amelie has been struggling to sit up in the car following her operation. “She’s falling, it’s not safe,” Pamela stressed.

“She’s got big long legs and they dangle off the edge.”

On top of this, the wheelchair must then be collapsed to transport also.

“The body of it is really heavy,” Pamela said.

“If we were able to travel with this, like this,” she said, motioning towards Amelie’s secure wheelchair, “she’d be much better positioned. “We would know that she is definitely safe and strapped in correctly.”

Phenomenal work

Lockdown has been extremely hard on Amelie, who could not get out for walks and exercise her legs.

“The only place she was fit to walk was the footpaths,” Pamela said, explaining they are “not great” in Cootehill.

“In that time her mobility got worse, she’s barely bearing weight at the moment.”

Pamela lowers her voice explaining Amelie “hates” when she talks about her condition.

“She works really hard,” Pamela said, explaining she puts in phenomenal work with her physiotherapist.

Pamela explained there is “no real reason” why she can’t walk, however Rett Syndrome will not allow her to do so.

Stephen, who is a special needs assistant at the Holy Family School in Cootehill, further explained his daughter’s condition.

“There are some girls with Rett Syndrome who do talk,” he begins.

He was in contact with a Israeli doctor who deals specifically with Rett Syndrome. One of his patients, who could speak perfectly, explained she would tell her legs to do something, however they failed to listen to her.

“That came from the horse’s mouth so I’m assuming Amelie is the same.

“She’s telling her body to do these things but it’s just not responding,” he explained.

This can lead to frustration and depression among people with Rett Syndrome; as can the response of people who do not acknowledge Amelie.

“People presume she doesn’t understand because she doesn’t speak,” she said, explaining this is not the case.

The couple had a stillborn baby boy before Amelie was born and, from this, they were on high alert when Pamela was pregnant with Amelie the following year. She got Rhesus disease, meaning she had to attend hospital appointments on a Monday, Wednesday and Friday during her pregnancy. At 22 weeks gestation, she had to get an intrauterine blood transfusion.

“We had to get three of those and every time there was a chance of death,” Pamela explained.

Amelie was born at 35 weeks old suffering from severe jaundice and breathing difficulties. After 10 days Amelie was sent home from hospital with close monitoring.

At nine months old, they noticed Amelie was “sitting up fine” however she “wasn’t moving to the next stage”.

With Stephen working as a SNA, the family knew something wasn’t right. They flagged their observations with the public nurse.

“She was always crying. She’d gone from this very happy baby to very anxious.”

At this stage, Amelie started to self-harm by cutting her hands and “bum shuffling” over to corners and hurting herself.

At 22 months old, Amelie was diagnosed with Rett Syndrome.

“When we googled it, it was a terrible prognosis,” Pamela said, as she remembered fearing she was never going to walk or even have shoes.

Despite being an “early speaker” Amelie had stopped talking by the time of her diagnosis.

The following month just after her second birthday, Amelie shocked everyone when she took her first few steps.

“They were very surprised,” Pamela said of her doctors.

Amelie began getting seizures when she was seven years of age, when she also developed breathing issues.

The McCormacks are unsure if their daughter will walk again but are most grateful for the eight years Amelie could walk.

“Fifty per cent of the girls don’t walk ever,” Pamela explained.

Loves

Amelie, who celebrates her birthday on Thursday, September 9, loves animals, watching movies and having pamper days with her sisters.

Like any other pre-teen her mother said she is “boy obsessed” with the Make A Wish Foundation giving her the opportunity to meet the Irish Rugby team.

She adores being out with nature, among the trees or close to water. The family often bring her to Bray, where they can be sure there is wheelchair access, or to forest parks.

“She just likes being out,” Pamela said, which is why the family need to get a modified vehicle.

Out of sheer desperation, Pamela set up a Go Fund Me page to help raise funds.

“It would be better if there was some sort of scheme so people didn’t have to do this,” she said, explaining it would be “more normal” if there were more government support for people with disabilities.

“It’s just not there,” she said. “If we don’t speak up for her, who’s going to?”

* To donate to the fundraiser click here