A SIBLING duo whose sister died from a rare form of dementia at just 31 years old say there weren’t enough tell-tale signs to think that she had such a horrendous disease.
Gemma Illingworth, from , was 28 when she was diagnosed with posterior cortical atrophy (PCA), a rare form of , in 2021.
PCA causes parts of the brain responsible for visual and spatial information processing to degenerate, which caused Gemma to lose her ability to see and physically function independently.
Her brother and sister, Ben Illingworth, 34, and Jess Illingworth, 29, described Gemma as “ditsy”; since childhood, struggling with simple tasks such as her sight, co-ordination, sense of direction and ability to tell the time, but said these characteristics did not raise concerns about her .
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.
Following her diagnosis in 2021, Gemma’s condition gradually worsened – she lost her ability to function independently, including having trouble feeding herself, swallowing, speaking and walking.
Gemma died on November 27 last year, aged 31.
Exactly five months later, Ben, Jess, and Gemma’s best friend Ruth Pollitt, 32, ran the Marathon to raise money for the National Brain Appeal and Rare Dementia Support (RDS).
Ben said: “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.
“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 I think in the whole world.”;
Before becoming ill, Gemma lived a healthy, independent life. She studied at College of Art and London Metropolitan University, then worked in 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.”;
Things got worse during lockdown
In 2020 Gemma was working for an 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 , 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.
Susie said: “This all had to be subtle as I wanted her to have independence for as long as it was safe.”;
Getting diagnosed
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 to 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 (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.
‘Her wicked sense of humour definitely didn’t go away’
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 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 while Gemma was still alive, and completed other 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 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.
To find out more about the JustGiving page, visit:www.justgiving.com/page/teamjrb.
