Jordan Adams, from Redditch, Worcestershire, is far from the first person in his family to have dementia. His grandmother had the disease, as well as several of her cousins, and his mom died from the disease at the age of 52. But none were as young as Jordan when they found out about their condition.
Jordan is just 23 years old, and he’s believed to be the youngest person in the UK to have a dementia diagnosis under his belt. He has a rare mutation of the MAPT gene that runs in his family and causes early-onset frontotemporal dementia and Parkinson’s Disease, which will eventually cause memory loss and other impairments and even take his life.
He may be young, but Jordan knows exactly what he’s getting into. He and his sister watched their mother, Geri, struggle with the disease for some six years, slowly forgetting how to walk, talk, and breathe for herself. She began acting out of character in 2006 and was diagnosed in 2010. In 2016, she passed away.
“Mum was full of love and very much a people person. No one had a bad word to say about her, she was very kind and lovely,” says Jordan. “She slowly got stripped of her communication. She couldn’t talk a lot and then she began to lose her mobility and couldn’t go out alone. As the disease progressed she lost the ability to walk and care for herself and for the last 18 months she was bedridden. It was heartwrenching.”
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When he and his long-time girlfriend, Lucy Thomas, began to think about spending their lives together and having children, Jordan knew the last thing he wanted to do was pass down such an awful disease to his children. So he decided to get tested for the MAPT mutation, and the results were not at all what he had hoped.
“When I was told the diagnosis I was devastated,” says Jordan. “We had been in the waiting area for what seemed like hours—it was only 10 minutes, but it felt like an eternity. As soon as I walked into the room I knew it wasn’t a positive result. Nobody can prepare you for that.”
It’s likely that Jordan will live a relatively normal life for 20 years or more before he starts seeing the effects of his disease sink in. But after that, he’ll lose many of the memories and abilities he has now, and his life expectancy will be drastically shortened.
“If there are no advancements then I’ll have a shorter life than most,” he says. “It’s like a death sentence. It’s very hard to explain. We’re all dealt cards in life, and I was just incredibly unlucky.”
Jordan and Lucy have decided not to use IVF to have children so that they can screen Jordan’s sperm and avoid passing down the gene mutation to their children. But for him, it’s already too late.
Jordan says he’ll likely spend the rest of his life taking part in dementia research and raising money for charity so that a cure can someday be found. He has also started a bucket list, which includes traveling to Hawaii, buying a house, and going skydiving.
Take a look at the video below to learn more about Jordan’s heartbreaking story.
Elizabeth Nelson is a wordsmith, an alumna of Aquinas College in Grand Rapids, a four-leaf-clover finder, and a grammar connoisseur. She has lived in west Michigan since age four but loves to travel to new (and old) places. In her free time, she. . . wait, what’s free time?