‘Why I’m lying awake at night’ Longford-linked Jordan Adams shares his biggest fear

31 year old Jordan Adams, who along with his brother Cian founded The FTD Brothers, has already reached extraordinary milestones in his efforts to raise awareness of Frontotemporal Dementia - the same devastating condition that affected their mother and which both brothers are expected to develop in their 40s due to an inherited genetic mutation.

From completing the London Marathon with a 25kg fridge on his back to raising over €2 million by running a marathon in every county of Ireland over 32 consecutive days, Jordan and Cian have become the definition of an inspiration.

Behind the remarkable fundraising achievements, however, lies a deeply personal fear.

In an emotional post on his social media, Jordan shared his fears about the future and his determination to build financial security for his wife and children before the condition takes hold.

As he prepares to release his first book on January 14, he appealed for people to support the publication as he works to secure his family's financial future before the disease takes hold.

Posting on his Facebook page, Jordan wrote, “I’m terrified I won’t have enough time to protect my family financially from what’s coming. I carry a genetic mutation that means I will develop frontotemporal dementia, just like my mum. Most likely in my 40s.”

“I was 15 when she was diagnosed. I spent my teenage years cleaning her when she became incontinent, watching her forget who I was, lose the ability to speak and eventually be fed through a tube. For her final two years, she spent up to 23 hours a day asleep in a hospital bed.”

“I’d give anything to have her back. But I never want my own children to experience what I did. I don’t want them washing, feeding or caring for me. I don’t want my wife to sacrifice her life looking after mine.”

“And that’s why I’m lying awake at night. Alongside building our non-profit to support families affected by dementia and fund research for a cure, I’m desperately trying to build financial security through storytelling, public speaking and brand partnerships.”

Jordan added, “I’m also about to publish my first book. And I’m terrified nobody will buy it. Because it’s not just a book. It’s my mum’s story, my family’s suffering and everything this disease has taken from us. But it’s also my chance to build a career that could one day pay for my care, so my children never have to.”

“I’m not trying to become rich. I’m trying to make sure my family doesn’t become poor because I get sick.”

“I want to show publishers that stories like ours matter. And I want to give this book the best possible chance of reaching people. Because every opportunity this creates is another step towards protecting the people I love.”

“I couldn’t save my mum. I might not be able to save myself. But I’m going to do everything I can to protect my family. F**k dementia.”