Two brothers, Jordan and Cian Adams, have been diagnosed with a rare form of dementia in their twenties, leaving them with just “15 good years” left.
After losing their mother to frontotemporal dementia (FTD), the brothers have inherited the same devastating condition that runs in families.
Jordan, 28, and Cian, 23, had their world turned upside down when genetic testing confirmed they carried the mutated gene for FTD.
This rare form of dementia, affecting about 10 to 15 percent of people with the condition, can be inherited from parent to child, as it did in their case.
After their mother Geraldine tragically passed away from FTD at the young age of 52, the siblings opted for genetic testing.
While their sister Kennedy received the all-clear, Jordan and Cian faced the harsh reality that they, too, would develop the same condition later in life.
Unlike other forms of dementia, frontotemporal dementia is often diagnosed between the ages of 45 and 65.
This means the brothers are facing their future much earlier than most, knowing that their time is limited, but they are determined to live it to the fullest.
“Our lives may be shorter than most, but this has made us both determined to make the most of the time we have,” Jordan told ‘MailPlus.’
he diagnosis, while devastating, has given him what he calls a “license to live,” pushing the brothers to savor every moment.
Cian expressed similar feelings, saying:
“A million times over I wish this had never, ever happened, that we’d never had to deal with this,” he said.
“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,” he continued. Both brothers have channeled their heartbreak into spreading awareness about FTD.
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The Adams brothers also face the difficult decision of how this inherited condition might impact their own families.
Jordan and his wife, Agnes, made the painful decision to terminate a pregnancy after learning the baby carried the same gene mutation. “We didn’t want that child to go through what we did in our childhood,” Jordan explained on Good Morning Britain.
To raise awareness and funds for Alzheimer’s research, the brothers — both avid runners — have embarked on an ambitious goal.
A grueling run from John O’Groats in Scotland to Land’s End in Cornwall. The challenge aims to support research into the disease that has shaped their lives.
At the time of writing, Jordan and Cian have raised over $182,000 for Alzheimer’s Research.
Their ultimate goal is to raise around 1 million in their lifetimes, hoping their efforts will help find a cure or better treatments for FTD.
The brothers’ journey is not just about their own lives but about leaving a legacy of hope and awareness for those who may one day face the same diagnosis. Their fundraising efforts continue, with supporters from around the world cheering them on in their mission.
Jordan and Cian are determined to make every day count as they fight for more awareness and research into FTD.
Their story serves as a powerful reminder that even in the face of unimaginable challenges, we can still strive to make a positive difference. If you’d like to support their cause, a link to their fundraiser can be found here.