'Our sister died at 31 with dementia - childhood signs we dismissed as ditsy'

For Ben and Jess Illingworth, life changed forever when their sister, Gemma Illingworth, was diagnosed with a rare form of at just 28 years old. "Gemma lived a normal life for the first 27 years of her life. And now she’s gone," she heartbreakingly shared.

This year, the siblings ran the London Marathon alongside Gemma’s best friend, Ruth Pollitt, 32, to raise money for the National Brain Appeal and Rare Support (RDS).

In 2021, Gemma was diagnosed with ), a rare form of that affects the parts of the brain responsible for visual and spatial processing. It meant that, over time, Gemma lost her ability to see properly, move independently and carry out everyday tasks.

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There are around 982,000 people living with in the UK, and age is the biggest known risk factor for the disease. So no one expected someone as young, vibrant and full of life as Gemma to be affected.

But her symptoms progressed quickly. She struggled to feed and dress herself, had difficulty swallowing and eventually lost the ability to walk and speak clearly. "She didn’t fully understand what was going on" Ben told PA Real Life.

"She thought that she could live a normal life, but she couldn’t … before we knew it, she couldn’t live unassisted."

Ben and Jess described Gemma as "ditsy" growing up, sharing that she’d always had trouble with coordination, getting around, or even telling the time. But this didn’t raise any serious concerns.

"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", Jess said

"There weren’t enough tell-tale signs to think that she had such a horrendous disease."

It was during lockdown that Gemma’s symptoms became impossible to ignore. She couldn’t process what was on her screen - a task she’d done effortlessly before.

She stopped working and sought answers from professionals. What may have been thought of as a vision issue that could be fixed with glasses led her to complete a series of neurological tests.

In April 2021, a brain scan confirmed there was something seriously wrong - doctors even assumed it was a tumour.

It wasn’t until later that year, following more brain scans, cognitive assessments and spinal fluid tests, that Gemma was diagnosed with PCA in November 2021.

Gemma’s family were "devastated", while "she was ecstatic." Jess said. She thought, "They know what’s wrong with me - we can fix it. She didn’t really understand what it meant, but in a way, that was a blessing in disguise."

Before she became unwell, Gemma lived a healthy ‘normal’ life. She studied at Leeds College of Art and London Metropolitan University, then worked in New York and London. However, when her condition worsened, she moved to to be closer to family.

Her mum, Susie, helped her with everyday tasks - ensuring the shower was off, making sure her clothes were on correctly. Still, she had to phone 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", her mother, Susie, 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," Ben shared.

"It’s the most cruel disease I think in the whole ," added Jess.

But despite the horrible condition slowly taking their sister and daughter away from them, there were parts of Gemma that would always shine through.

"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," Ben said.

"She had a bit of a wicked sense of humour which definitely didn’t go away."

Gemma passed away at the age of 31 in November last year at home, surrounded by her family. Exactly five months later, her two siblings and best friend honoured her memory by running the London Marathon.

They signed up while Gemma was still alive and had already raised £28,000 through a sponsored walk in June 2023. Running the marathon was a way to "raise as much money for RDS so that they can try and prevent stuff like this happening again."

"They couldn’t cure Gemma, but they helped us navigate it the best way we could." Ben said. Jess also explained that the end goal was "do it for Gemma, make her proud."

Though they started the race in different waves, the trio managed to find each other during the run and finish it together, raising more than £19,000 for RDS so far. To support their run, visit: https://www.justgiving.com/page/teamjrb