A brother and sister from Manchester have completed the London Marathon to honour their sister, Gemma Illingworth, who died at 31 from a rare form of dementia known as posterior cortical atrophy (PCA). Diagnosed at the age of 28, Gemma’s condition deteriorated rapidly, stripping her of her independence and eventually her ability to see, walk, and speak. Despite the challenges, she continued to be cared for at home, surrounded by her loving family.
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Gemma’s siblings, Ben and Jess Illingworth, along with her best friend Ruth Pollitt, ran the marathon just five months after her passing, raising £28,000 for the National Brain Appeal and Rare Dementia Support. Gemma had always been described as slightly “ditsy”, but her symptoms worsened during lockdown, prompting neurological assessments that confirmed the devastating diagnosis. Her family admitted they never suspected such a severe condition until it became impossible to ignore.
Before her illness, Gemma led a vibrant, independent life, having studied in Leeds and London before working in New York. However, the neurological degeneration affected her vision and cognitive abilities, eventually forcing her to stop working and move back home for full-time care. Despite her struggles, Gemma remained spirited, often finding humour in small moments, even in her final days.
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The marathon was a deeply emotional experience for her family. Ben described it as “emotional but uplifting”, while Jess said the motivation was simple: “do it for Gemma, make her proud”. The family now hopes their fundraising will help support other families affected by rare dementias and raise awareness about PCA, which remains widely misunderstood.
