Blog

When Gemma Illingworth was growing up in Manchester, her family simply saw her as creative, quirky, and maybe “a little ditsy.” What they didn’t know was that the young woman was living with a rare, degenerative brain disease that would take her life at only 31 years old.

Diagnosed with Posterior Cortical Atrophy (PCA) at 28, Gemma’s world changed almost overnight. Within just three years, the condition robbed her of her independence, her speech, her mobility—and eventually, her life.

Now, her devastated family is sharing her story in hopes that others can spot the early warning signs and access the support, treatment, and legal guidance they never expected to need.

⚠️ Missed Signs of a Silent Disease

From childhood, Gemma struggled with tasks like telling time and navigating spaces—symptoms that were dismissed as personality quirks rather than red flags. “There weren’t enough tell-tale signs to think it was something this horrific,” said her sister Jess.

But by the time the world locked down during the COVID-19 pandemic, Gemma’s challenges escalated. Her vision began failing, her memory slipped, and her anxiety deepened. Doctors first attributed the symptoms to depression or stress, but the truth was much more dire.

Eventually, Gemma left her job in insurance, unable to function independently. She began calling her mom 20 times a day for help—unaware of the severity of her own decline.

Nurse holds patient’s hand. Credit / Shutterstock

🧠 The Devastating Diagnosis: PCA

A series of brain scans and neurological tests confirmed what the family feared: Gemma had Posterior Cortical Atrophy, a rare and poorly understood form of dementia that affects the area of the brain responsible for processing visual information.

Unlike typical Alzheimer’s disease, PCA often strikes younger people and progresses quickly. The Alzheimer’s Association states there is no standard diagnostic test or approved treatment for PCA, and no way to slow its aggressive course.

Gemma’s initial relief at finally getting a diagnosis—“We can fix it,” she had said—was tragically misplaced. Within months, she lost the ability to read, walk, speak, and even eat.

💔 Saying Goodbye

Despite the rapid progression, Gemma’s family cherished the small moments. Her brother Ben remembered, “You could still get a laugh out of her, even near the end.”

Gemma passed away peacefully on November 27, 2024, at the age of 31.

Her obituary reflected not just the depth of the family’s grief, but their unwavering pride in her courage and spirit.

“She had a wicked sense of humor. The disease may have taken her body, but it couldn’t steal who she truly was.”

”

🏃 Running for Gemma: A Legacy of Awareness & Hope

Determined to make sure other families don’t face this nightmare alone, Jess and Ben—along with Gemma’s best friend Ruth—ran the London Marathon on April 27, 2025, exactly five months after her passing. They raised over £20,800 (~$27,800 USD) for the National Brain Appeal and Rare Dementia Support (RDS).

Prior fundraisers had already collected £28,000 (~$37,500 USD) in 2023 to support research, advocacy, and family care initiatives.

“They couldn’t cure Gemma, but they helped us navigate the unimaginable,” Ben shared.
“Now, we want to make sure no one else feels as lost as we did.”

.

💡 What Families Should Know

If you suspect a loved one may be showing signs of young-onset dementia, early intervention is key. Families may also qualify for:

• Disability and health insurance claims for neurological diseases

• Caregiver legal protections and mental health leave

• Specialist counseling for family caregivers and dementia support services

• End-of-life planning and estate guidance with a certified healthcare lawyer

• Support group directories for PCA and Alzheimer’s variants

🔗 Find early signs of brain disorders and support
🔗 Access insurance & legal support for rare neurological conditions
🔗 Caregiver burnout: How to cope & recover

✨ In Loving Memory

Gemma’s story reminds us that dementia isn’t just an elderly person’s disease—and that even in the darkest times, love, laughter, and legacy can shine through.

Let’s honor Gemma by fighting for earlier diagnosis, medical funding, and family support structures that don’t leave anyone behind.

Rest in peace, Gemma. Your light lives on.