TWO brothers from Worcestershire who have a '99.9 per cent' chance of developing early-onset frontotemporal dementia (FTD) have appeared on a BBC show with musician and comedian Bill Bailey.
Jordan and Cian Adams, from Redditch, have appeared on the BBC's Extraordinary Portraits, which sees artists create 'breath-taking' portraits of people with 'incredible personal and powerful stories'.
In the episode, the brothers spoke to Bill Bailey about finding out that they had inherited the MAPT gene mutation, which they say gives them a '99.9 per cent' chance of developing the same familial frontotemporal dementia (FTD) that claimed the life of their mum at the age of 52.
Speaking on Extraordinary Portraits, Cian said: "It's incredibly rare to have this type of dementia, but to put it into perspective, our nan was one of six siblings, and four out of the six had dementia in their 40s.
"We had a 50 per cent chance of inheriting the faulty copy from our mum, and once you inherit it, you unfortunately have 100 per cent chance of developing symptoms of FTD.
"We know that we are carriers of the genetic fault.
"We are going to lose our lives more than likely in our 40s," Jordan added.
"It's going to be like watching what mum went through all over again with us."
Since their mum's death, and after learning that they had inherited the MAPT gene mutation, Cian and Jordan have undertaken several fundraising challenges, with the goal of raising £1 million for research into early-onset FTD.
Most recently, Jordan completed the London Marathon with a fridge on his back, a symbol of the weight of knowing that he is likely to develop FTD in his 40s.
In the episode, the brothers were paired with artist Unza Saleem, who was tasked with capturing the pair's essence.
After the final portrait was revealed, Jordan said: "I'm just pleased that Unza's been able to encapsulate us at that moment in time and to see us just laughing because I think a lot of the things that we do can be often quite serious and quite sad because of the topic and the circumstances, and people forget that we are two normal lads who take the mick out of each other and have a laugh.
"We didn't want it to be dark and negative; we wanted it to be optimistic and capture our good energy," Cian added.
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