Jordan Adams sat in a waiting room, his heart pounding against his ribs like a drum. Somewhere behind a closed door, a consultant held an envelope containing his future. Not his career. Not his finances. His actual future. How many years does he have left to live?

At 23 years old, most young men worry about rent, relationships, and whether they’re on the right career path. Jordan worried about something far more sinister. Something buried deep in his DNA. Something he’d watched destroy the person he loved most in the world. His mother. And now, after months of waiting, he was about to find out if he would share her fate.

When Everything Changed

Picture a 15-year-old boy sitting in class, thinking about homework and weekend plans. Now, picture that same boy receiving a message from the school office telling him to go home with friends. No explanation. Just go.

Jordan Adams lived that moment in 2010. Hours passed before his parents arrived to pick him up. His father, Glenn, was crying. His mother, Geraldine, seemed confused, almost distant. Something was wrong. Something big.

That evening, Glenn gathered Jordan, his older sister Kennedy, and his younger brother Cian into the living room. What came next would shatter their world. Mom was sick. Not sick like a cold or even cancer. Sick with familial frontotemporal dementia. A disease with no treatment. No cure. And a death sentence measured in years, not decades. Geraldine was only 47.

Signs Hidden in Plain Sight

Looking back, Jordan could trace the warning signs. Small changes that seemed like nothing at first. His mother, once outgoing and full of life, stopped wanting to see friends. Low moods replaced her spark. She asked the same questions over and over, forgetting she’d already received answers.

Driving became dangerous. She forgot to check her blind spot. Bumps with other cars became routine. One snowy day, she burned out the clutch because her brain could no longer compute how to control the vehicle.

A woman who once danced around the kitchen and cheered from the sidelines at sports events was disappearing. Piece by piece. Memory by memory. And her family could only watch.

A Teenager Becomes a Caregiver

No child should have to bathe a parent. No teenager should have to help their mother to the toilet. No young person should witness dignity stripped away by disease. Jordan did all of it.

As Geraldine’s condition worsened, she became bedridden for her final two years. Jordan and his siblings provided care that most people don’t face until middle age, if ever. While his friends planned Friday nights with bottles of cider in the park, Jordan went home to clean up after accidents and help with basic bodily functions. He was living in a different universe. One of his peers could never understand. On March 14, 2016, Geraldine died. She was 52 years old.

A Family Divided by Fear

Grief affects everyone differently. Kennedy, the oldest sibling, became consumed by a question. Could she carry the same gene that killed their mother? She convinced herself she must be a carrier and became desperate for answers.

Jordan went the opposite direction. He boxed up his emotions and became angry. Weekends meant excessive drinking and fights. Black eyes became common. He put stress on his father during a time when Glenn was already drowning in his own pain.

Nobody talked about genetic testing. Not at first. Grief was too heavy. Then Kennedy connected the dots. Familial FTD could be inherited through something called the MAPT gene mutation. A 50/50 chance for each child.

In early 2018, Kennedy got tested. She was not a carrier. Her family threw a party. Best news they’d received in nearly a decade.

For Jordan, watching his sister’s celebration felt bittersweet. She was free. He might be too. Or he might have just received a death sentence without knowing it yet. His anger transformed into depression. For a dark period, he no longer wanted to live.

30 Days of Agony

Jordan realized that knowing was better than not knowing. Living in limbo was its own kind of death. He qualified for genetic testing through the NHS but had to complete mental health counseling first. A wise requirement, given what he might learn.

After months of consultations, he gave blood. Then came the wait. Thirty days. Thirty sleepless nights. He traveled to Tenerife and Amsterdam, trying to distract himself. He spent time with football friends, pretending life was normal. It wasn’t.

September 12, 2018, arrived. Jordan sat in another waiting room, just like the one where his mother’s diagnosis had first entered their lives. When the consultant finally called him in, he read her face before she spoke.

“Before she had even shut the door and sat down, she said, ‘I’m sorry, but it’s not the result you were looking for.'” Jordan carried the MAPT gene mutation. He would develop familial FTD. Probably in his forties. Just like his mother.

Relief in the Midst of Devastation

What happened next might surprise you. Yes, there were tears. Yes, devastation crashed over him like a wave. But something else emerged, too. Something unexpected. “There were tears and devastation in that moment. Ultimately I was going to live a much shorter life, and the reality of that went flashing through my mind. But I also felt relief, knowing the uncertainty was over.” He said.

Relief. In learning, he would die young. Because at least now he knew. The waiting, the wondering, the constant anxiety of maybe had ended. His future was terrible, but it was certain. And certainty, even dark certainty, can be its own strange comfort.

Kennedy sobbed in the waiting room and drove him home. Jordan walked into his house and sat on the same sofa where his father had delivered the news about their mother years earlier. Glenn hugged his son, his body language apologizing for something neither of them could change.

Another Brother Falls

Six months later, Cian got his results. Positive. Both brothers now faced the same future. Both would develop symptoms in their forties. Both would likely die before reaching 50. Two sons follow their mother down the same tragic path.

They could have given up. Could have wallowed in despair. Could have spent their remaining healthy years bitter and broken. They chose differently.

In 2020, Jordan matched with a 20-year-old digital marketer named Agnes on Instagram. After messaging back and forth, they agreed to meet for a drink.

On their very first date, Jordan told her everything. His mother. His gene. His timeline. Most people would have run. Agnes stayed.

Their relationship moved fast by necessity. When your future is shortened, you don’t waste time on games. They talked about mortality and reality in ways most couples never do. In July 2024, they married.

Now they’re pursuing IVF with a technology that seemed like science fiction just years ago. Pre-implantation genetic diagnosis allows doctors to screen embryos and ensure children won’t carry the MAPT gene. Jordan’s future children will never face the fear he faced. They will never sit in a waiting room wondering if they’ve inherited death.

He wants to protect them from something else, too. From becoming caregivers. From bathing their father. From losing their dignity to a disease that takes everything.

Brothers on a Mission

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Instead of surrendering to despair, Jordan asked his consultant a question that revealed everything about his character.

“I know that there’s no treatment or no cure, but what, what can I do to contribute towards research?”

He joined a study at University College London, taking annual tests to help future carers. But he wanted to do more. When Cian received his diagnosis, the brothers decided to channel their pain into purpose.

They became @TheFTDBrothers on social media. They ran marathons. They completed seven marathons in seven days. They ran from Redditch to London in a week. They covered the entire length of the UK, from John O’Groats to Land’s End, in 31 days. They completed 982 laps of their local athletics track, one lap for each of the 982,000 people living with dementia in Britain.

So far, they’ve raised over £400,000 for Alzheimer’s Research UK.

Earlier this year, Jordan quit his job as a painter and decorator. With Agnes’s support, he now dedicates himself fully to fundraising and awareness. Fighting the disease that will eventually claim him.

Playing Your Hand

Jordan Adams knows his symptoms will appear in his forties. He knows he’ll probably begin losing his life by 45. He knows he’ll die the same way he watched his mother die.

And yet. He refuses to see himself as a victim. He refuses to spend his remaining healthy years in grief. He runs marathons. He raises money. He got married. He’s trying to have children. He’s living.

Most people think dementia only affects the elderly. Most people offer hollow comfort when they hear Jordan’s story. “Maybe it will skip a generation,” they say. “You never know how things will turn out.” They don’t understand. Twelve relatives have died from this mutation. Science offers no uncertainty here. But science doesn’t determine how Jordan spends his remaining years. That choice belongs to him.

We’re all playing a hand we didn’t choose. Some hands are easier than others. Some contain cards so painful we can barely look at them. Jordan Adams received one of the hardest hands imaginable. A genetic death sentence delivered at 23. He’s still playing. Still running. Still loving. Still fighting. Because the cards don’t define you. How you play them does.

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