Woman died from rare dementia aged 31 as siblings pay courageous tribute

Daily Record

07-05-2025

Gemma Illingworth was just 28 when she was diagnosed.
A brother and sister pairing who tragically lost their sibling to a rare form of dementia at just 31-years-old courageously completed the London Marathon in her honour.
Gemma Illingworth was was only 28 when she got the devastating news that she had posterior cortical atrophy (PCA) in 2021 – an uncommon dementia type that degrades the brain's visual and spatial information processing areas.
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The condition swiftly stripped Gemma of her vision and her physical independence, eventually robbing her of basic abilities like feeding herself, swallowing, speaking, and walking.
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Tragically, Gemma passed away on November 27 last year, at the age of 31. Five months to the day from her death, her brother Ben, 34, sister Jess, 29, alongside Gemma's best mate Ruth Pollitt, 32, pounded the tarmac of the capital in the London Marathon.
They embarked on this challenge to fundraise for the National Brain Appeal and Rare Dementia Support (RDS).
Throughout her life, Gemma, from Manchester, was known to be "ditsy", with Ben and Jess noting her lifelong issues with tasks such as recognising objects and people, coordination, navigation, and even reading time – yet these quirks never pointed towards a serious health issue.
But Gemma's condition significantly declined during the Covid lockdown, losing her ability to see or interact with her computer at home, which led to her leaving her job and undergoing numerous neurological evaluations that culminated in her shock diagnosis.
Ben revealed to PA Real Life the heart-wrenching journey Gemma faced: "She didn't fully understand what was going on, and she thought that she could live a normal life, but she couldn't ... before we knew it, she couldn't live unassisted.
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"Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick.
"Gemma lived a normal life for the first 27 years of her life. And now she's gone."
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Susie Illingworth, Gemma's mother, spoke of the ordeal, saying, "The demise was utterly heartbreaking."
Jess also weighed in on the situation, saying, "It's the most cruel disease I think in the whole world."
Before becoming seriously ill, Gemma attended Leeds College of Art and London Metropolitan University and went on to work in New York and London. Shae then returned to Manchester to be near family, initially living by herself.
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However, as her condition worsened, Gemma found herself increasingly reliant on her parents for support.
Discussing the subtle onset of her illness, Jess said: "Maybe we were slightly in denial, I don't really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support.
"There weren't enough tell-tale signs to think that she had such a horrendous disease."
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Gemma's challenges continued to mount in 2020 while working for an insurance company, as the lockdown made her job exceedingly difficult due to her inability to process visual information on a screen.
Jess explained that post-cortical atrophy (PCA) affected Gemma's brain-eye messaging, meaning corrective glasses would not help with her vision problems.
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Gemma was forced to stop working due to her health struggles with sight and mood after initially being signed off for anxiety and depression in December 2020.
Even though she stopped work, Gemma remained living away from home, relying increasingly on her flatmate and parents' support.
Her family would often ensure everything at home was safe and secure, and Gemma would call her mum up to 20 times daily for support.
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Susie said: "This all had to be subtle as I wanted her to have independence for as long as it was safe."
However, Gemma returned to her family home when everyday activities became too challenging for her.
In April 2021, Gemma underwent a brain scan which Ben said "unfortunately confirmed that there was something quite substantially wrong with her brain", which doctors first thought to be a tumour.
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Subsequently, Gemma underwent further evaluations at University College London (UCL) hospital.
At 28, she received a diagnosis of PCA in November 2021.
Jess reflected that the family felt "devastated" upon receiving the news, whereas Gemma was "ecstatic", believing "they know what's wrong with me, we can fix it".
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Unaware of the full implications, Jess observed that Gemma's response was a silver lining, notring that Gemma "didn't know what it really meant, but that was obviously a blessing in disguise".
Gemma's condition gradually deteriorated following in 2021, impacting every aspect of her daily life.
She lost the ability to care for herself, struggling with tasks such as eating, swallowing, speaking and walking as her illness escalated.
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Despite her worsening health, Gemma never spent time in hospital, instead receiving care at home from her loving family.
Ben shared: "Up until the very end, there were parts of her that sort of remained ... you could have a lot of difficult hours, but you could still get a laugh out of her.
"She had a bit of a wicked sense of humour which definitely didn't go away."
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Surrounded by her family, Gemma passed away peacefully at home on November 27 last year.
The team had committed to the London Marathon while Gemma was still battling her illness. Additionally, they carried out other charity events including a sponsored walk in June 2023, collectively raising £28,000 for the National Brain Appeal.
Ben explained their marathon efforts: "We're trying to raise as much money for RDS so that they can try and prevent stuff like this happening again.
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"They can put their arms around families like ours. They couldn't cure Gemma, but they helped us navigate it the best way we could."
Running the marathon was an emotional journey, especially doing so alongside his sister and having friends and family support them throughout, Ben said.
Jess declared the ultimate aim was to "do it for Gemma, make her proud".
Though starting in different waves, the team ultimately united to run the marathon together, and so far, they have raised over £19,000 for RDS.