By James Somper
A 23-year-old man is believed to be the youngest adult in the UK ever diagnosed with dementia – with his odds of developing the disease less than winning the Euromillions.
Jordan Adams was told he would develop early onset frontotemporal dementia and Parkinson’s Disease after inheriting a gene which caused the degenerative conditions from his mum Geri, who died at the age of 52.
The entrepreneur was given the crushing news he had a rare mutation of the MAPT gene, which causes the condition, by doctors last month and has been told his condition will deteriorate as he gets older.
While Jordan has no signs of the illness now, doctors have told him he could lose the ability to walk, talk and eat for himself at any time and his life could end in his fifties, as his mum and aunty Ann did.
But he now plans to have his sperm screened for the gene so he and girlfriend Lucy Thomas, 21, can start a family before his symptoms develop – and also plans to tick travelling to Hawaii, buy a house, and skydive off a bucket list.
Jordan, from Redditch, Worcs, said: “When I was told the diagnosis I was devastated.
“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.
“If there are no advancements then I’ll have a shorter life than most.
“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 was given the news he had tested positive for the gene when he and sister Kennedy, 25 decided to get themselves tested after watching beloved mum Geri deteriorate over a period of six years.
He was finally given the results on September 12 after three gruelling months of consultations and blood tests.
Jordan said he saw the full impact of the disease while caring for Geri, as he watched her lose the ability to talk, walk and eventually eat and breathe for herself.
Her family first noticed something was wrong in 2006, when she suddenly began acting out of character, but she was not diagnosed until 2010 before passing away in 2016.
Jordan said: “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.
“We’d noticed irregularities in her behaviour.
“I remember one Saturday she went to pick up Kennedy from school but it was a weekend.
“Her character changed from being a loving woman and she became quite cold.
“She seemed to lack compassion which was a huge change from when she’d covered us in love.
“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.”
Jordan said that despite his initial shock, he and girlfriend Lucy Thomas, 21, have discussed their plans for their future together and that he feels like his diagnosis will give him a unique perspective on life.
They are considering having IVF when they decide to start a family as the process will allow doctors to screen his sperm for the dementia-carrying gene.
Jordan said: “I feel like the diagnosis is actually a licence to live.
“It’ll make me step back and appreciate the bigger picture. It’s going to allow me to make choices to live a fulfilled life.
Lucy added: “We’ve decided that it’d be probably best to have children first and then get married.
“We know it’s different to how most people would it do but it’ll give Jordan more time with his kids.
“It’s hard to deal with knowing he won’t be there one day but it’s important to retain perspective.
“We will have a life together despite everything.”
Jordan’s sister, Kennedy, 25, said that her brother has shown huge courage since he was given the shattering news.
She was given the all clear in May this year that she did not have the gene.
She said: “This disease is hereditary, aggressive, and rare.
“I’ve been told you have more chance of winning the EuroMillions than getting it.
“But Jordan’s been incredible, and he’s not going to let it destroy him.
“When I found out he had the gene, I said if I could have had it instead then I would.
“It’s like you’ve got a black cloud over you but you don’t know when the storm will come.
“He has got time but we just don’t know how much – he has no symptoms yet, but it could start tomorrow.
“He won’t get it when he’s old and grey, but when he’s young and fit.
“It will first strip him of his personality.
“He won’t have likes and dislikes and he won’t be able to hold a conversation.
“Eventually he won’t be able to feed himself and walk.”
“How can this happen to one family? When will it stop? It seems never-ending.”
To make a donation to Jordan’s bucket list: https://www.gofundme.com/jordans-bucket-list-fund