A ‘devoted mother’ has been diagnosed with motor neurone disease (MND) after her symptoms were initially mistaken for benign muscle twitches caused by stress.
Holly Turner, 45, had already lost her mother and sister to the condition but had no idea she had inherited the genetic mutation herself.
Four years ago, Holly’s sister, 50, began struggling to walk—and was given the same devastating diagnosis.
Holly, from Hastings, East Sussex, helped care for her sister and noticed her own muscles began to spasm while she was looking after her.
But doctors initially suggested it was benign fasciculation syndrome—involuntary muscle twitching that’s often linked to stress and caffeine use.
The twitches can be subtle-strong enough to feel but unlikely to cause jerking or big, noticeable movements-and most commonly affect the eyelids, arms, hands, fingers, legs, and feet.
Shockingly, two years on, tests revealed the true cause: Holly was told she too had MND.
According to the NHS six people are diagnosed with MND every day.
Holly Turner, 45, had already lost her mother and sister to motor neurone disease, but had no idea she had inherited the genetic mutation herself
Holly, from Hastings, East Sussex, helped care for her sister and noticed her own muscles began to spasm while she was looking after her
Around 5,000 adults in the UK live with it and people have about a one in 300 risk of developing the condition over the course of their life.
It mainly affects people in there 60s and 70s, but it can affect adults of all ages.
Life expectancy for about half of those with the condition is just two to five years from the onset of symptoms. How quickly symptoms get worse varies between patients, it can happen in as little as seven months or years.
Since her diagnosis last year Holly has deteriorated to the point she struggles to walk without extreme pain and is trying to make as many memories as she can with her son, Koby, 14.
Her mother-in-law, Linda McQueen, 66, a part-time carer, said: ‘She is a selfless and devoted mother. Her life has always revolved around others and her son.
‘She’s been trying to act as normal as possible around Koby, but the whole situation is so tragic. It’s a death sentence.’
Holly was devastated when her sister was diagnosed with MND in summer 2022, after she became ill in 2021.
The sisters had already lost their mum to the disease in 2013. Linda said: ‘Holly and her sister helped to look after their mum.
In June last year, Leeds Rhinos star Rob Burrow, 41, died after a four-and-a-half-year battle with MND. Pictured, Rob Burrow in 2013
The exact cause of MND unknown, but it often hits seemingly fit and healthy people. Pictured, Rob Burrow being made a CBE by the Prince of Wales in January 2024
‘She deteriorated quite quickly. It started with her voice slurring. They thought it was a stroke.
‘When they did identify it was MND they didn’t know there was a genetic thing in the family.’
Holly had to look after her sister and started to notice her own muscles would spasm while nursing her.
In October 2021, Holly was hospitalised for 11 days after fainting episodes.
She was initially diagnosed with postural orthostatic tachycardia syndrome, also known as POTS, and underwent testing for MND, however the results came back negative.
She was also reassured by doctors her twitching muscles were not a sign of anything sinister.
Linda said: ‘MND is very difficult to diagnose. Other things can mimic it.
‘Benign fasciculation syndrome is a symptom of MND but it can just happen by itself.’
Holly sadly lost her sister in July 2023 and continued going back and forth to the doctors for her own health.
She starting getting cramps, and a weakness in her right foot and was eventually officially diagnosed with MND in July 2024.
Along with twitches, cramps and muscle weakness are among the early signs of the condition, along with slurred speech and weight loss.
There is no cure but doctors can provide treatments to help reduce the impact it has on a person’s life.
The exact cause is largely unknown, but current research points towards a complex interplay of genetic, environmental, and possibly lifestyle factors—and it often hits seemingly fit and healthy people.
In June, Leeds Rhinos star Rob Burrow, 41, died after a four-and-a-half-year battle with the condition.
Holly had to break the news of her own diagnosis to her son and Linda said he was ‘absolutely devastated’.
Linda said: ‘My grandson sadly witnessed family members suffer and pass from MND, so he is devastated in knowing what’s to come for his mum whom he relies on heavily and is incredibly close to.
‘When she walks she can only walk for a couple of minutes—then her legs start to burn, because the muscles are dying.’
Linda has now set up a GoFundMe page to raise money for a red light therapy, which they hope could slow down the progression of the disease.
They also want to raise enough money to send Holly on holiday.
Linda said: ‘She wants to ensure her son has good memories with her. He really wants to go to Italy and she is also interested in the culture.
‘She’s just hoping to get away sooner rather than later.’
Since her diagnosis last year, Holly has deteriorated to the point she struggles to walk without extreme pain and is trying to make as many memories as she can with her son, Koby, 14.
They are looking to do a Marella cruise which would offer special assistance due to Holly’s mobility.
Linda said that Holly was initially reluctant to set up the GoFundMe.
She said: ‘She’s not the sort of person who likes the limelight and she’s quite overwhelmed with her face being all over Facebook. But she understands that if she doesn’t do this she won’t get to make these memories.
Linda said: ‘Everybody wants to know how they can help her because everybody feels powerless in a situation like this. This is the only way we feel like we can actually help her now.’
