Two brothers in their 20s both diagnosed with rare form of dementia that means they have '15 good years left'
Two brothers have spoken out about being diagnosed with a rare form of dementia in their twenties.
Brothers Jordan and Cian Adams, aged 28 and 23, had their lives turned upside down after learning they had inherited frontotemporal dementia (FTD) from their mother.
A rare form of the neurocognitive disorder, FTD can often run in families due to a single 'faulty' gene passed down from parent to child.
This is known as familial FTD and impacts 10 to 15 in every 100 people with FTD according to research from Alzheimers UK.
Advert
After their mother Geraldine died from the condition in 2016, aged just 52, the brothers and their older sister Kennedy opted to undergo genetic testing for the condition.
Kennedy would ultimately learn she had not inherited the condition while Jordan and Cian received the devastating news that they were carriers of the gene and would develop FTD later on in their lives.
Unlike other types of dementia, FTD is typically diagnosed at a much younger age range of between 45 and 65.
Aware of what awaits them after witnessing what happened to their 'loving, generous and vivacious' mother, the brothers have now decided to make the most of their '15 good summers' while also raising awareness about the condition.
"Our lives may be shorter than most but this has made us both determined to make the most of the time we have," Jordan said in an interview with MailPlus, adding that the diagnosis had given him a 'license to live'.
"A million times over I wish this had never, ever happened, that we’d never had to deal with this," Cian added.
"It’s horrible and I wish it wasn’t the case but it has given us meaning and a chance to make a difference in the world."
The pair are also aware of the risks of passing the condition on to their own children, with Jordan and his wife Agnes making the heartbreaking decision to terminate a pregnancy after discovering the foetus had the mutated gene.
"Me and my partner found out that she was pregnant. But because obviously we want to make the informed choice that we don't want it to be passed on to our children," he explained in a previous interview with Good Morning Britain.
"We unfortunately went through a stage of genetic testing for the child and found out that they were a carrier of the gene.
"So we had to, unfortunately, terminate that pregnancy because we didn't want that child to have to go through what we did in our childhood."
The brothers - who are both keen runners - have decided to undergo a gruelling run from John O’Groats, Scotland to Land's End in Cornwall to fundraise for Alzheimers Research.
Jordan and Cian have raised over £150,000 at the time of writing and are hoping to raise around £1 million for the charity in their lifetime.
A link to their fundraiser can be found here.
Brenna Cooper