Doctors confirmed he’ll lose his mind before 50, but the detail about his unborn child is what broke the internet

Jordan Adams, a 30-year-old from Redditch, has gone public about the reality of living with the knowledge that he will develop early-onset dementia in his 40s. He has been open about his fears and his mission to raise awareness, including sharing a detail about his unborn child that resonated widely online. As detailed by LADbible, the story quickly gained traction after he shared his experience publicly.

Jordan’s connection to frontotemporal dementia (FTD) began when his mother, Geraldine, was diagnosed with the condition in 2010, when he was just 15. FTD carries a life expectancy of seven to thirteen years after symptoms first appear. Geraldine’s family noticed gradual shifts in her personality, lowering mood, and increasing memory lapses, with doctors initially misdiagnosing her with depression and other conditions, including a silent stroke.

On June 23, 2010, the family received confirmation that Geraldine had early-onset frontotemporal dementia. Jordan’s father, Glenn, told his children their mother was terminally ill. At the time, Jordan’s sister Kennedy was 17, Jordan was 15, and his younger brother Cian was nine. Each of them had a 50 percent chance of inheriting the same genetic fault.

The whole family became her caregivers as the disease progressed

As Geraldine’s condition worsened, the family took on her full care. They had to stop her from driving after her license was revoked, assist her when she became confused and wandered, and eventually help with feeding and bathroom needs when she became permanently bed-bound and could no longer walk or talk. Geraldine passed away peacefully at the family home on March 14, 2016, at the age of 52.

After her death, Kennedy chose to undergo genetic testing at the Dublin Neurological Institute under Professor Tim Lynch, who had researched familial FTD extensively in their family. Professor Lynch explained how a mutation of the MAPT gene caused the condition in their family. In spring 2018, Kennedy received confirmation that she had inherited the normal copy of the gene from her father, meaning she would not develop FTD.

Kennedy’s decision inspired Jordan to get tested. In September 2018, he received his result: he carries the faulty copy of the gene and will develop FTD, as his mother did. Jordan describes his diagnosis as a “license to live,” using the knowledge of what lies ahead to make deliberate choices about his life.

The genetic reality also means any child he has faces a 50 percent chance of inheriting the mutation. When Jordan and his partner, Agnes, discovered their unborn child also carried the faulty gene, they made the decision not to continue with the pregnancy, a detail that drew significant attention online.

In February 2023, Jordan’s younger brother Cian also received his genetic test result and was confirmed as a carrier. Both brothers are expected to become symptomatic in their early 40s and face a prognosis of around ten years after onset. Amid a wave of stories about genetic conditions reshaping family futures, the Adams family’s situation has stood out for the scope of what they are facing across generations.

Jordan has channeled his fear into fundraising and awareness efforts, with the phrase “f— dementia” as his rallying call. He has spoken about his fear of forgetting his wife’s name, losing his memories, becoming a burden, and never becoming the father he had hoped to be. He also worries about the impact on those around him, including his sister Kennedy’s family, who will witness his deterioration and Cian’s.

Jordan and Cian have already completed major fundraising challenges, including running the length of the UK. Jordan’s next undertaking is running 33 marathons in 33 days, with the first being the London Marathon on April 26, where he plans to run with a fridge on his back to draw attention to the cause. The Love Is Blind Argentina sentencing made headlines around the same week Jordan’s story was gaining traction online, though his has drawn attention for an entirely different reason: the lengths one family is going to in the face of an inherited death sentence.

Jordan’s fundraising efforts support the Alzheimer Society of Ireland and the FTD Brothers Foundation, the brothers’ own nonprofit, with the goal of funding research toward a cure for all types of dementia.