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The two siblings of a once healthy, independent woman who died from a rare form of dementia at just 31 have honoured her memory by competing at the London Marathon.
Gemma Illingworth, from Manchester, was diagnosed with posterior cortical atrophy (PCA) in 2021 at 28.
The rare form of dementia causes parts of the brain responsible for visual and spatial information processing to degenerate.
Following her diagnosis, Gemma's condition deteriorated, robbing her of her independence and impacting basic functions like eating, swallowing, speaking, and walking. On November 27 last year, she died, aged 31.
Exactly five months later, her siblings Ben Illingworth, 34, Jess Illingworth, 29, and Gemma’s best friend Ruth Pollitt, 32, ran the London Marathon to raise money for the National Brain Appeal and Rare Dementia Support (RDS).
Ben and Jess described Gemma as “ditsy” since childhood, struggling with simple tasks such as her sight, coordination, sense of direction and ability to tell the time, but said these characteristics did not raise concerns about her health.
Gemma’s difficulties worsened during lockdown when she became unable to see or process her screen at home, prompting her to stop working. She completed a series of neurological tests, which led to her dementia diagnosis.
“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,” Ben said.
“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.”
Susie Illingworth, Gemma’s mum, said: “The demise was utterly heartbreaking.”
Jess added: “It’s the most cruel disease in the whole world.”
Before becoming ill, Gemma lived a healthy, independent life. She studied at Leeds College of Art and London Metropolitan University, then worked in New York and London.
Gemma moved to Manchester to live closer to her family, initially living independently, but she started requiring increasing levels of support from her parents.
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.”
In 2020, Gemma was working for an insurance company, but when lockdown was enforced, she struggled to work from home as she had problems seeing and processing information on screens.
Because PCA affects the messaging from the brain to the eyes, Jess said Gemma’s struggle with her vision could not be fixed with glasses.
Gemma was signed off work in December 2020 for anxiety and depression, but eventually had to stop working because of struggling with her sight and mood.
She stopped working but stayed living away from home, requiring increasing levels of support from her flatmate and parents.
They regularly checked on Gemma, helping with tasks including ensuring the shower and cooker were turned off and her clothes were on correctly, and she often phoned her mum up to 20 times a day for support.
“This all had to be subtle as I wanted her to have independence for as long as it was safe,” Susie said.
Gemma moved home when she could no longer complete everyday tasks which required motor and cognitive skills, including changing bed sheets, getting dressed, and arriving at appointments on time.
In April 2021, Gemma had a brain scan, which Ben said “unfortunately confirmed that there was something quite substantially wrong with her brain”, which doctors first thought was a tumour.
Gemma was referred to University College London (UCL) hospital for further brain scans, cognitive, and spinal fluid tests.
Aged 28, Gemma was diagnosed with PCA in November 2021.
Jess said the family were “devastated” by the diagnosis, but Gemma was “ecstatic” because she thought “they know what’s wrong with me, we can fix it”.
Gemma “didn’t know what it really meant, but that was obviously a blessing in disguise”, said Jess.
Following her diagnosis in 2021, Gemma’s condition gradually worsened, and her illness came to affect every aspect of her life.
She gradually lost her ability to function independently, including feeding herself, swallowing, speaking and walking as her illness worsened.
Gemma never stayed in the hospital and was cared for at home by her family.
Ben said: “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.”
Gemma died surrounded by her family at home on November 27 last year.
The team signed up for the London Marathon while Gemma was still alive, and completed other charity fundraisers, including a sponsored walk in June 2023, raising £28,000 for the National Brain Appeal.
By running the marathon, Ben said: “We’re trying to raise as much money for RDS so that they can try and prevent stuff like this from happening again.
“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.”
Ben described the experience of running with his sister and seeing friends and family around the course as “emotional”.
Jess said the end goal was “do it for Gemma, make her proud”.
Although the team were put on different starting waves, they managed to meet and run the marathon together, raising more than £19,000 for RDS so far.
Visit the JustGiving fundraising page here.
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