HOLLY Turner was devastated when her sister was diagnosed with an incurable disease that stole her mum just years earlier – but she never imagined she was next.
“It’s a death sentence,” says her mother-in-law, Linda McQueen.
Doctors initially dismissed Holly’s muscle spasms as benign fasciculation syndrome, a condition causing frequent muscle twitches.[/caption]
“She’s trying to act normal around Koby [her son], saying things like ‘Well, Koby, I might be here when you grow up.’”
Holly, 45, from Hastings, East Sussex, lost her mum to motor neurone disease (MND) in 2013 but had no idea she carried the genetic mutation herself.
Tragically, just four years ago, her sister, then 50, started struggling to walk and was diagnosed with the same cruel condition.
Holly helped care for her – then, chillingly, her own muscles began to spasm.
Doctors initially dismissed her symptoms as benign fasciculation syndrome, a condition causing frequent muscle twitches.
But in 2022, a nerve conduction test showed hyper-excitable neurons, an early sign of MND.
Two years later, she was given the devastating official diagnosis.
MND is a fatal and incurable condition affecting around 5,000 people in the UK.
It damages nerves, causing muscle weakness, speech issues, and breathing problems.
Holly herself is now struggling to walk without extreme pain.
However, she is focused on making as many memories as she can with her 14-year-old son.
Linda, 66, a part-time carer, describes her as “a selfless and devoted mother whose life has always revolved around others.”
Holly’s sister was diagnosed in summer 2022 and tragically passed away in July 2023.
The family had already endured the heartbreak of losing their mother to the same disease.
“They helped care for their mum,” Linda explains.
The disease has already killed Holly’s mum[/caption]
“It started with her voice slurring -they thought it was a stroke. By the time they knew it was MND, they had no idea it was genetic.”
Holly’s own health declined rapidly.
By October 2021, she was hospitalised for 11 days due to fainting episodes and was later diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).
Making good memories
When she finally received her MND diagnosis in July 2024, she had to break the devastating news to Koby.
“My grandson has already seen family members suffer and pass from MND – he is absolutely devastated,” Linda says.
“When Holly walks, she can only do so for a few minutes before her legs start to burn. The muscles are dying.”
Linda has now launched a GoFundMe page to raise money for red light therapy, which they hope could slow the disease’s progression.
They’re also hoping to fund a holiday for Holly and Koby.
“She wants to ensure her son has good memories with her,” Linda says.
“He really wants to go to Italy, and she’s always been interested in the culture.
“We just hope she can get away sooner rather than later.”
What is motor neurone disease?
MOTOR neurone disease (MND) is a condition that impacts the brain and nerves, causing weakness over time.
It affects up to 5,000 adults in the UK at any one time. It is most common in people in their 60s and 70s.
Symptoms happen gradually and may not be obvious at first.
Early signs can include:
- Weakness in your ankle or leg – you might trip, or find it harder to climb stairs
- Slurred speech, which may develop into difficulty swallowing some foods
- A weak grip – you might drop things, or find it hard to open jars or do up buttons
- Muscle cramps, twitches and spasms
- Weight loss – your arms or leg muscles may have become thinner over time
- Stiff joints which limit range of movement
- Difficulty stopping yourself from crying or laughing in inappropriate situations
- Saliva problems, where it pools in the mouth or becomes sticky
- Weakened coughing, which makes it harder to clear the throat
- Breathing problems
There is no cure, and MND can significantly shorten life expectancy.
But treatments, which can reduce the impact of symptoms, include specialised clinics, physiotherapy, speech and language therapy, diet advice and medicines to reduce muscle stiffness.
Source: NHS and Motor Neurone Disease Association
They are looking into a Marella cruise, which offers special assistance for Holly’s mobility needs.
Linda admits Holly was initially reluctant to set up the fundraiser.
“She doesn’t like the limelight, and she’s overwhelmed seeing her face all over Facebook.
“But she knows if he doesn’t do this, she won’t get to make these memories.”
Linda adds: “Everybody wants to help, but they feel powerless. This is the only way we can actually do something for her now.”
