I wouldn't change my sister for the world, says Lanarkshire teenage carer Fraser

He was only three years of age when Fraser Reilly’s mum witnessed an act of kindness in him that foretold the devoted, selfless young carer he was to become.

Diane had invested many hours of research into how best to break the news to her son that his baby sister, on whom he doted, was blind.

Baby Erin, she gently explained, ‘sees the world in a different way to you and I.’

A few months later, as Erin sat in her high chair, Diane watched Fraser place a small toy in her hand to encourage her to do something that had, until then, eluded her. She played with him.

Erin was just five weeks old when alarm bells began to ring for Diane, with the realisation that her baby girl was failing to track faces and objects with her eyes.

An appointment with the GP led to a trip to hospital, at which medics diagnosed congenital nystagmus – an involuntary to-and-fro movement of the eyes that develops in infancy and persists throughout life.

Four weeks later, Erin became unwell and was unable to hold her head up.

A subsequent MRI scan at 16 weeks revealed a thinning of the brain lining, which suggested she would have little or no muscle tone, and would, therefore, be unlikely to ever walk or talk.

“I was in complete denial for a good four months,” said Diane, of Cleland.

“Don’t get me wrong. You just go through the motions. It’s another day, another day. I asked myself: ‘Can you fix this, can you cure this? Is there something we can do?’”

Although their girl is severely visually impaired, Erin’s parents have always had a dogged determination to do everything in their power to help their daughter achieve her full potential and live her best life.

She defied doctors by learning to walk and to talk – always with big brother, Fraser, at her back.

“We have worked so hard to get her where she is,” said Diane. “She’s a miracle. A doctor told me that had Erin been born into another family, she would not have progressed to the extent she has.”

Fraser was, explained 39-year-old Diane, only seven years old when he began to instinctively carry out tasks that would help with Erin’s care.

“You have been a great carer, ever since you were little,” she tells her son. “Without a doubt, it just comes naturally to you.”

Erin would experience regular, heavy nose bleeds and if their mum was busy in the kitchen, Fraser would quietly take over, pinching his sister’s nose and counting to 300 until the bleeding stopped.

When Erin has a seizure in the night, Fraser will tell his mum to comfort her while he strips her bedding and replaces the sheets before she goes back to sleep.

He guides her across the road, teaching her about the different paving textures underfoot that allow her to identify an approach to a crossing.

Last week, she boarded a bus for the first time to visit her grandad, accompanied by her brother, in what was a big test.

“The bus was moving under my feet,” said Erin. “I fell – but I got back up again.”

With a number of symptoms falling under one umbrella – including chronic fatigue and autistic traits – a gene screening failed to arrive at a defined diagnosis for Erin’s genetic condition.

On the rare occasions when Cleland Primary pupil Erin, who’s now aged 11, does venture out with friends, it’s a trip to the local park.

Not wishing to embarrass her by watching from the sidelines, Diane stays home while Fraser and his pals circle the park for an hour on their bikes, “just to keep an eye out and make sure she’s okay.”

Having your big brother looking out for you, says Diane, is cool – and that, for Erin, makes it acceptable. Determined that Erin never feels isolated or excluded, Diane encourages her to invite her friends for dinner and sleep-overs.

And she also involves her daughter’s classmates in trips to The Fort shopping centre or the cinema.

“As a family, we have tried so hard to keep her as independent as possible,” continued Diane. “If she is an independent child, she will be an independent adult.

“At the end of the day, she just wants to do the same as everybody else. And in this day and age, there’s no reason why she can’t.”

Challenging behaviour is another trait of Erin’s set of conditions. She can be hurtful and say cruel things.

Diane tries to reassure her son that his sister doesn’t mean to offend or wound – because she cannot comprehend how others interpret what she does or says.

“For all of her struggles, we do have a great time together,” continued Diane, who says Erin would never go out of her way to hurt anyone.

“I’m not saying we live in a world full of flowers. When it is good, it is great, and when it is bad, it can be awful.

“Last year, the seizures returned and they were really frequent. We had four or five months of it, but we came out the other side.” Her children’s creativity is a source of great pride to Diane.

In spite of her severe visual impairment, keen drawer Erin displays talent as a photographer, with her mum saying she is frequently “gob-smacked” by the quality of her pictures. Musician Fraser plays the guitar and clarinet and takes piano lessons with his little sister.

He gently mocks her for wanting to play tracks from The Greatest Showman, while his repertoire comprises tracks by Queen and other acts from the ‘70s and ‘80s.

Fraser was an 11-year-old P7 pupil when another of his considerable talents came to the fore – as did his maturity, which defies his years.

He opened his heart in a beautifully constructed piece of creative writing in which he spoke of his life as a young carer, and his love for his little sister.

Entitled ‘Do you see me like I see me?,’ The prose describes being awakened in the night by the sound of ambulance sirens and, as a little boy, being dropped off at his gran’s or uncle’s while his mum accompanied Erin to hospital – frequent occurrences he accepted as the norm.

The essay speaks of his anger, upset and frustration when people poke fun of his sister because of her disability.

“A disability is not something to be made fun of,” he wrote. “It can be something that makes you special and stand out from the crowd.

“No-one but her could be better as my sister. It doesn’t matter if she has problems and needs my help. That just makes her better in my eyes and probably in my mum’s eyes, too.

“I wouldn’t want anyone to replace her. She is my sister, she is amazing, she inspires me and she is just the best person I have ever met. I wouldn’t change her for the world.”

Fraser’s caring and compassionate nature was tested again in June 2020 when his father fell 30ft, puncturing his lung and suffering internal injuries, a dislocated shoulder and multiple broken bones.

He was in a coma in the Queen Elizabeth University Hospital for two weeks and has been a wheelchair user since his accident.

He relies on his 14-year-old son to assist with his shopping, some light cooking and housework, and routine chores like putting the bins out.

Fraser’s energy, good humour and mischievous sense of fun also keep his dad’s spirits up.

Although never one to complain, Fraser’s additional responsibilities became easier to bear when his mum put him in touch with the North Lanarkshire Young Carers group – part of charity Action for Children.

Action for Children project team leader Carla Maguire said: “In the 10 years I have worked for Action for Children, I’ve never met a young person who complains about home life. It is a complete inspiration.

“It is very common that young people do not know that they are young carers, and they need help to realise that.”

The project, through which Fraser had made many friends, introduced him to Reeltime Music – an initiative that aims to bring about a positive change in the lives of disenfranchised young people through the provision of affordable recording and rehearsal services, workshop and training provision, volunteering and partnership projects.

There, talented musician Fraser came into his own, mentoring other young people who were experiencing the power of music for the first time.

The young carers group also secured a place for him last summer at the Over the Wall Camp in Stirlingshire – a residential outdoors experience and another catalyst for the formation of new friendships.

He’ll return this summer with Erin.

Through the project, he’s also been to see the Lion King, and he’s even watched his heroes, Queen, perform live.

Calling for more funding for North Lanarkshire Young Carers and other projects like it, Fraser said: “It’s not all just fun stuff. It is more the fact that they want people to realise that young carers is ‘a thing.’ It is a break, and a check-up on your mental health.

“Sometimes it bottles up, and it can come out in different directions. The project helps with that, and so does talking to other young people who are in the same position and understand.

“But I never think: ‘Why me?” That would be pointless.”

Mum, Diane – who works in the mental health arena – echoed her son’s call for the project to receive additional resources.

“I don’t think young carers get the recognition they deserve. These young people are in families where someone has a disability, and you do not ask for help, unless you really need it,” said Diane, who is adamant that her son’s caring responsibilities do not interfere with his education.

“A lot of adults are oblivious that some children are young carers. Like Fraser, they do things automatically. It’s second nature to them.

“ I can guarantee there will be someone out there reading this story who doesn’t have a clue Young Carers projects are out there for them.”

For more information on North Lanarkshire Young Carers click here.

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