Woman Learns She Has Same Disease that Took the Lives of Her Mom and Sister, Leaving Teenage Son ‘Absolutely Devastated’

A mom has been diagnosed with a progressive neurodegenerative illness — the same one that her late mom and sister had — and now, she’s trying to make memories with her teenage son.

Holly Turner, 45, first started to feel a twitch in her leg four years ago when she was caring for her late sister, 50, who was struggling with amyotrophic lateral sclerosis (ALS) — called motor neuron disease (MND) in the UK. Their mother, who died in 2013, also had the same disease, which is also known as Lou Gehrig’s disease.

Turner, who hails from the English town of Hastings, said doctors initially said the stressful situation caused her to develop benign fasciculation syndrome, which the Cleveland Clinic explains are “harmless,” albeit “annoying” twitches that aren’t the result of an underlying medical condition. 

As Turner’s mother-in-law, Linda McQueen, said, according to The Daily Mail, “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.”

But in October 2021, Turner was hospitalized for 11 days after fainting. It was then that doctors diagnosed her with postural orthostatic tachycardia syndrome, also known as POTS. The condition causes your heart to rapidly beat when you transition from sitting or lying down to standing up, making you faint, feel dizzy, or experience shortness of breath.

At the time, Turner was tested for ALS/MND, but tests came back negative.

After her sister died in July 2023, Turner continued to experience symptoms — and after struggling with cramps and weakness in her right foot, she was diagnosed with the progressive disease. Although there are therapies for ALS/MND, there is “no cure,” the Cleveland Clinic explains, as muscles continue to atrophy, leading to “life-threatening outcomes.” 

When Turner told her son Koby, 14, McQueen said he was “absolutely devastated.”

“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,” said McQueen, who set up a GoFundMe to pay for therapies for Turner — and for Turner and Koby to go on a disability-accessible cruise.

At first, McQueen said her daughter-in-law was reluctant to do a fundraiser, saying, “She’s not the sort of person who likes the limelight … But she understands that if she doesn’t do this she won’t get to make these memories.”

As she explains, “When she walks she can only walk for a couple of minutes — then her legs start to burn, because the muscles are dying.” 

“She is a selfless and devoted mother. Her life has always revolved around others and her son,” McQueen said. “She’s been trying to act as normal as possible around Koby, but the whole situation is so tragic. It’s a death sentence.”