‘The demise was utterly heartbreaking’ – siblings run London Marathon for sister who died with dementia aged just 31

A sibling duo whose sister died from a rare form of dementia at just 31 years old completed the London Marathon in her memory months after her death.

Gemma Illingworth, from Manchester, was 28 when she was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia, in 2021.

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, and 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, co-ordination, sense of direction and ability to tell the time, but said these characteristics did not raise concerns about her health.

Ben told PA Real Life: “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.”

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 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.

“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.

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.”

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.

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.

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 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.