Young Redditch brothers with 'Bruce Willis gene' may have 'only 15 summers left'

Jordan Adams, 28, and his brother Cian, 23, both inherited a gene that puts at risk of dying of dementia early

Two brothers from the West Midlands say they might only have "15 or 20 healthy summers left" due to having a rare faulty gene. Redditch siblings Jordan Adams, 28, and his brother Cian, 23, both inherited a gene that puts them at risk of dying prematurely of frontotemporal dementia (FTD) - the same condition affecting actor Bruce Willis.

The siblings discovered they carried it after their "beautiful" mother Geraldine died from frontotemporal dementia in 2016 aged just 52. In 2018, Jordan was given the news that he was a carrier of the faulty copy followed by his brother Cian in 2023, meaning both will likely becoming symptomatic of FTD in their early 40s and lose their lives within 10 years of diagnosis.

The pair's sister Kennedy was given the all clear from investigative tests, meaning that it is just Jordan and Cian who will have to live with the illness in their lifetime. Jordan and Cian told BBC Breakfast they "might have 15 or 20 healthy summers left” and that they plan to use their time to “raise as much awareness" as possible.

READ MORE:Brothers with 'faulty' gene that causes rare dementia in 40s on mission to find cure

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The pair are currently running the length of the UK from from John O'Groats to Land's End, running at least 30 miles a day, to raise money for Alzheimer's Research UK. They hope to reach Land’s End on October 1 and have raised an incredible £132,000 on their JustGiving page.

Jordan was just 15 when he and his siblings lost their beloved mum Geraldine. After watching his mum lose her speech and sleep for more than 20-hours a day, Jordan said his diagnosis was a ‘license to live.'

The dementia-risk brothers have taken action by speaking in the community and fundraising for Alzheimer's Research UK through various running challenges. The pair said their dream is to now raise £1 million for Alzheimer’s Research UK, and they "won't stop" until it's done.

The NHS says that frontotemporal dementia is an uncommon type of dementia that causes problems with behaviour and language. Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.

Symptoms can include personality and behaviour changes, language problems, problems with mental abilities and memory problems. And sufferers may also experience physical issues including slow movement, loss of bladder and bowel control, muscle weakness and difficulty swallowing.

Jordan and Cian said: "This has led us to raise the bar in our efforts to raise awareness and funds for ground-breaking research which can ultimately lead to a cure for all types of Dementia and that’s why in 2024 were setting out on an epic challenge to run the entire length of the country."

Since the brothers appeared on BBC Breakfast, they have been inundated with well-wishers, moved by their story. Keith Tracy wrote on their fundraising page: "Good luck chaps, as someone whose mum passed away with dementia I really appreciate what you're doing."

Lisa S added: "Saw you both on BBC Breakfast news. All the very best with your running challenges and personal futures Well done on what you have already achieved. You’re doing your mom proud and rest of your family."

You can find Jordan and Cian's JustGiving page, which is currently at a total of £132,055, here.