A mum has had to watch her real-life family tragedy unfold on Coronation Street after character Oliver Battersby was diagnosed with the same incurable condition as her nine-year-old daughter, Kiya.
In the soap, viewers saw the three-year-old son of Leanne Battersby and Steve McDonald diagnosed with mitochondrial disease, which left both characters contemplating the idea of life without their toddler.
Beckie Hilling, 45, has real-life experience of what it feels like to come to terms with this diagnosis.
Just one year ago, her daughter Kiya was enjoying life as normal.
It wasn’t until her frequent headaches sparked worry for her mum that either had any idea anything was wrong.
Mitochondrial disease - caused by mutations in body cells - is inherited and each person is affected differently, which can make it difficult to diagnose.
Symptoms can range from fatigue and exercise intolerance to hearing loss, seizures, strokes, heart failure, diabetes and kidney failure, according to Boston Children’s Hospital.
Some symptoms will be present from birth whereas others don’t present themselves until way into adulthood.
In many cases, though, the condition begins with persistent headaches - as it did with Kiya, who was eventually diagnosed after taking a test.
Weeks later, mum Beckie was given the same diagnosis and the family now anxiously awaits test results for her mother and sister.
Kiya will likely lose her ability to walk and open her eyes as the condition progresses.
She is now at the point in her journey where she is beginning to use wheelchairs more frequently due to feeling increasingly weak.
Beckie Hilling said: “Just over a year ago, she was completely healthy as far as I was aware. None of us saw it coming.
“Getting that news – your whole world just falls apart. All the plans we had for the future, now we don’t know how long we have with her.
“I’d always heard stories of other children falling ill and was so thankful I had a healthy child.
“It’s literally a living nightmare.”
The family hopes that the storyline on Coronation Street will highlight the impact the little-known condition has on people suffering from it and their families.
Speaking about the storyline, Beckie’s sister, Clare Jacomb, 43, explains how it has felt to watch it play out on TV: “It’s brilliant that the illness has been featured on Coronation Street, because it has raised awareness. People just hadn’t heard of it.
“The story is really hard-hitting, but equally, it’s different when it’s a real-life story and a real family, with someone who is actually going through it.
“We just need more people to be aware of this terrible illness. It’s robbing children and adults of any quality of life.”
For Kiya, March 2019 marked the first of many seizures. They can last up to 13 hours, which meant she had to be sedated.
Beckie said: “Kiya was top of the class, really clever, and she had a great sense of humour.
"She loved horse-riding and she won the skipping race in her school sports day.
"She was also a real daredevil, and she used to love going to theme parks for the rollercoaster rides.
“Now, she’s too poorly to do any of that.”
Beckie added that Kiya was aware she was poorly but wasn’t “aware of how bad it was going to get”.
The family are now waiting to hear whether or not they’re suffering from the same condition and have praised Coronation Street for shedding some light on the disease.
Additional reporting by SWNS.