On first meeting, Jordan and Cian Adams seem like any other vibrant young men in their 20s. Fit as fiddles, chatty and charismatic, you’d assume they have the world at their feet.
The world they live in, though, is crueller than that. In the past five years, these close-knit brothers, aged just 28 and 23 respectively, have both learned they are carriers of a gene that determines their future in one of the grimmest ways imaginable.
It means both will succumb to Frontotemporal Dementia, or FTD, a rare type of dementia caused by damage to the nerve cells at the front of the brain and which mostly affects people under the age of 65.
They are most likely to become symptomatic in their early 40s and could lose their lives within ten years of diagnosis. And as yet there is no medication they can take to delay symptoms or offer any hope of a cure.
It is an agonising fate to confront, compounded by having watched their beloved mother Geraldine go through it before them.
Cian, left, and Jordan Adams hope to raise £1million for Alzheimer’s Research UK
Throughout her 40s, she transformed from a vibrant woman whose smile could light up the room to someone who, by the time of her tragically early death at the age of just 52, could not speak or move unaided and did not recognise her children.
Such a fate would lie heavily on anyone but, with humbling courage and fortitude, both brothers are determined to make the most of what they call the ’15 good summers’ they may have left.
Instead of a death sentence, they are determined to view their diagnosis as what Jordan calls a ‘licence to live’.
‘Our lives may be shorter than most but this has made us both determined to make the most of the time we have,’ he says.
‘We want to do everything we can to live a meaningful life, to raise awareness and funds [to fight] this horrible disease.’ Those sentiments are echoed by his younger brother. ‘A million times over I wish this had never, ever happened, that we’d never had to deal with this,’ he says.
‘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.’
They are certainly doing that. We are talking at the end of another long day on the road for the pair, who are running the length of the UK to raise funds for Alzheimer’s Research UK – part of a mission to raise a £1 million in their lifetime.
They set off from John O’Groats on September 1, have already raised nearly £150,000 and hope, by the time they set foot at the tip of Cornwall today, to raise even more. They have been running up to 30 miles a day, every day, often through driving rain.
‘Every day we think, ‘Not again!’,’ Cian admits cheerfully, still soaking from today’s outing. ‘But it’s just not an option to stop. There’s a really good reason why we’re doing this and that’s what keeps us going.’
What keeps them forging ahead, too, is memories of their mother. Growing up in Redditch, Worcestershire, with their older sister Kennedy, now 30, both boys recall a happy childhood with Geraldine and their dad Glenn, who runs a property business and worked as a painter and decorator.
‘We had a nuclear family really, it was lovely,’ says Cian. ‘We were relatively comfortable financially, by no means well off but we had a good upbringing. Mum would do everything for us.’
Geraldine was the heart of the family, a social butterfly who loved hosting friends and the wider family.
‘She’d cook a big chilli con carne and we’d have all our cousins round on a mid-week night after school,’ smiles Cian.
‘She used to love her R&B music, too. She’d quite frequently have it blasting in the car when we’d be on the way to school.’
Cian and Jordan’s mother Geraldine who they watched go through Frontotemporal Dementia before them
The pair’s older sister Kennedy, 30, who they shared a happy childhood with growing up together in Redditch, Worcestershire
Her larger-than-life character meant that it did not take long for family members to notice changes in her behaviour as she progressed through her 40s.
‘She was becoming less outgoing, her mood lowering, and there were memory lapses,’ says Jordan.
He recalls one occasion when, on a Saturday morning, Kennedy received a distressed phone call from Geraldine asking why she hadn’t come out of school – when of course, it being the weekend, she wasn’t there.
‘She called Kennedy twice,’ Jordan recalls. ‘Mum was the type of person who was so hot on being at every school occasion, so to get something like that wrong straight away set off alarm bells.’
There were lots of other muddles and absences. ‘Kennedy and I got very anxious travelling to school in the morning because Mum would quite frequently forget to check her blind spot and things like that, and pull out on people,’ he says. ‘It started happening more and more frequently.’
In time, the changes were enough for the family to seek medical help, although getting a diagnosis would prove a battle in itself, not least because Geraldine was still so young, which meant dementia wasn’t on doctors’ radars.
Only later were the family able to connect up the family history.
The daughter of Irish parents from County Longford, Geraldine had a wide, extended family, some of whom, her children now know, were also affected by FTD, along with her mother, who also died young. Perhaps most poignantly, Geraldine was also mistakenly given a diagnosis of depression after the death of her father from other causes.
Finally, after months of back and forth with assorted GPs and consultants, in June 2010, Geraldine was given the bombshell news that she had ‘early-onset’ Frontotemporal Dementia (FTD).
Later that evening, it was left to their father to break the devastating news to Kennedy, Jordan and Cian, then 17, 15 and nine, that their mother was terminally ill and her health would only get worse over the next few years.
Jordan recalls: ‘I remember Mum was almost in denial: she stood there saying, ‘Oh, I feel fine, I don’t understand why they’re telling me this’. But there was also a lot of confusion there too for her.’
For the boys, meanwhile, it was overwhelming and they were largely innocent as to what to expect of a dementia diagnosis.
As months, then years, wore on Geraldine’s health deteriorated catastrophically. While in time the family had carers, everyone did their bit, ensuring she was never left unattended and helping to feed, dress and bathe her when she was no longer able.
‘If she had an accident then it was our job to clean her up,’ says Jordan. ‘Those are probably the most traumatising parts for me in terms of what I saw as a teenage boy.’ Both boys now acknowledge they were affected differently.
‘I remember school being a massive relief for me at the time,’ says Cian, who admits he subsequently struggled with anxiety for many years in the wake of what his mother had been through.
For Jordan, it was the opposite: ‘I hated school, didn’t want to be there because of what was going on at home. I resented it.’
At the same time, he felt a burning sense of injustice that he admits lingered on even after Geraldine’s death.
‘There was this sense of, ‘Why is this happening to me?’ and I carried that for a few years,’ he admits. ‘I missed out on a lot of stuff that lads my age do. Then, after Mum died, I did it too much.
‘I would spend all my money on weekends going out with my mates, drinking way too much, getting into fights on a weekend, almost looking for trouble.’
Sadly on March 14, 2016, at the age of 52, Geraldine passed away peacefully at the family home, a final grief to compound the long slow loss the family had already endured.
‘Even though we had prepared and there was an element of relief, it was still heartbreaking’ says Cian. Until then, their father had made a conscious decision not
to address the hereditary aspect of their mother’s condition – a decision both boys respect fully – but Jordan admits that it was already on his mind.
FTD is a rarer type of dementia, accounting for around one in 30 cases in the UK. Not all those with FTD have a family history.
The siblings posing for a school photo. From left: Jordan, Cian and Kennedy
Jordan, Kennedy and Cian pose for a photo with their father Glenn, who runs a property business and worked as a painter and decorator
Jordan says that Kennedy was especially concerned: ‘People often say how alike she looks to Mum, and having seen what had happened she just needed to know.
‘She’d met someone, she was thinking she might want to start a family and she was adamant pretty quickly that if there was genetic testing available, she was always going to go for it.’
After extensive genetic counselling, Kennedy underwent a test in the spring of 2018 revealing she had not inherited the
faulty gene that had caused her mother’s dementia.
It was, Jordan recalls, a ‘trailblazing’ moment, sparking his own desire for the truth about his destiny.
‘I think if she’d had a different result then it might have made me want to live in blissful ignorance for a while, but the fact that she’d had a positive result meant I felt I needed to go for it,’ he says.
‘And actually, the not knowing was becoming a bigger problem for me than the result itself.
‘I felt life was spiralling out of control because I couldn’t get it out of my head.
‘I realised I’d be in a better position to get on with my life if I found out one way or another.’
So, just five months after his sister, Jordan underwent his own test – only to receive very different results: unlike Kennedy, he was a carrier of the faulty gene.
‘There’s a 50-50 chance, isn’t there, so I was prepared,’ he says, quietly, of receiving the result.
‘You can either go through one of two doors and my initial reaction, as soon as I was told, was that I know there’s no cure, but thinking what I could do to turn this into a positive.
‘It would, however, take another five years for Cian to take the plunge. ‘I was at university, I was going to be there for three years, and I wanted to enjoy my ignorance I suppose, as it wasn’t going to change the path of my life at that time,’ he says.
Now working as a physiotherapist after graduating, he finally underwent the test last February.
Brothers Jordan and Cian have a five-year age gap but have always maintained a close bond
Jordan, right, poses with Cian on his graduation. Cian now works as a physiotherapist following three years at university
‘It was surreal – knowing you are waiting for the biggest piece of news you are ever going to get in your life,’ he says.
‘You can’t prepare for it really, however much counselling you have. I had one older sibling negative, one older sibling positive, and actually half of me thought I hope I’m positive because I don’t want my brother to have to go through this on his own.’
One can only imagine how Kennedy feels, as the only one of the siblings to have dodged this terrible bullet.
‘I think in many ways it’s just as bad for her as it is for us,’ says Cian. ‘We are so close and she knows she is going to have to watch us go through it, whenever that may be.’
Nor is it just their future that is affected of course: profoundly aware that they could pass on the gene to their own children, it affects their relationships in the present, too.
Jordan got married in July – his wife Agnes, 24, works in marketing – and almost from the moment they met on social media during the pandemic, he felt he had to be transparent about what he was living with.
‘I think because family’s always been so important to Jordan, he wanted to make sure that whoever he met knew what the future meant, and what options there were,’ Agnes, a smiley and calm presence, tells me.
The couple have already been through the agony of a termination, after Agnes fell pregnant last year and the couple discovered their unborn child carried the gene.
‘It was incredibly traumatic for both of us,’ says Agnes, ‘but particularly for Jordan as it brought back the diagnosis all over again.’
The couple are now looking into the possibility of selective IVF to enhance their chances of carrying a healthy child, using something called genetic implantation diagnosis.
‘It’s a complicated rollercoaster as there is only a 30 per cent chance the IVF will work,’ says Jordan. ‘So we are still discussing it at the moment.’
Cian too has a girlfriend, Helen, who is also supporting him on the run, although they are not yet at the stage of talking about having a family.
For now the focus for both brothers is reaching the end of their run and seeing what else they can do to raise awareness.
‘Obviously dementia research is complex because people can’t work on a live brain,’ says Jordan. ‘But whether there is a cure in our lifetime or not I also believe that we can be a force for change.’
To donate please visit justgiving.com/fundraising/FTDbrothers
