‘We want to raise a million pounds before we die of illness that took our mum’

Brothers Jordan and Cian Adams – who carry the gene for familial frontotemporal dementia (FTD) – are running the London Marathon

Two brothers who lost their mother to dementia are preparing to run the London Marathon in a bid to raise funds and awareness before they too get the disease.

Jordan and Cian Adams’ mum, Geraldine, was diagnosed with familial frontotemporal dementia (FTD) at 47, and died five years later in 2016. Following genetic testing, it was revealed that both Jordan and Cian carry the gene for FTD, while their sister Kennedy does not.

During an appearance on BBC Breakfast, Jordan, who was just 15 when his mother received her diagnosis, shared: “I am a carrier. I have a 99.9% chance of getting familial FTD. It’s not a matter of if. It’s a matter of when.”

He added: “And I just want do as much as I can in the time that I have to help those living with dementia, those impacted by it, so that I leave this world, hopefully in a better place when dementia does take my life.”

The brothers will participate in the London Marathon, with Jordan planning to run with a fridge strapped to his back, before embarking on another 32 marathons in Ireland to pay tribute to their mother’s Irish heritage, reports the Mirror.

“We set a monetary goal to try and raise a million pounds before we die of dementia,” Jordan stated.

Reflecting on his mother’s struggle, he said: “Incredibly difficult thing to have to watch her be stripped of everything that made her who she was and then eventually lose her life after six years of living with FTD was completely heartbreaking.”

“I’ve got the best part of 10 to 15 years to bring hope to millions of families who were devastated by it,” he declared. “I want to show people that you have no control over the cards that you get dealt in life, but you have a choice of how you play your hand.”

BBC Breakfast host Naga Munchetty, who co-hosted the programme with Charlie Stayt, asked Jordan whether he believed his mum was aware of “the kind of grit” he and his brother possess.

In response, he said: “You know, we were afforded such an amazing upbringing. The amount of love that my dad and my mum spilled over into our lives during our childhood was amazing. We were afforded every opportunity you could wish for in life.

“But I think ultimately, that grit and determination, has sadly come out of the back of going through a series of devastating life events. Being told that mum was ultimately terminally ill at the age of 15, myself, and Cian was nine. You go through a hell of a lot, and it’s taken a whole family support network and a real test of character I guess, to still be here and still live some sort of quality of life.

“And life has been very testing over the last 10 or 15 years.”

He continued, “Mine and Cian’s future is now clear in the sense that, every day we get further from our beautiful mum leaving this world to something that stripped her of everything that made her be an amazing person that she was.

“Every day we get further away from that grief and and the trauma of caring for her, we get a day closer to getting it ourselves. And that’s an incredibly kind of difficult weight and burden to carry.”

He continued: “We’re on a mission because we have a clock kind of ticking against us, and we want to make as much of a difference in the next 10, 15 years that we have and the time that we have left.”

BBC Breakfast airs on BBC One from 6am.