Daniel Bradbury inherited the devastating disease from his father and has been warned his 18-month-old twins have a 50 percent chance of developing it in later life.
He began showing symptoms of the disease in July last year when he lost his engineering job because bosses said he was “under-performing.”
The former aerospace worker went to his doctor and following a series of tests, was diagnosed with Alzheimer’s last September.
Blood tests revealed he had the rare PSEN1 gene mutation which is a common cause of early onset-Alzheimer.
Tragically, his own father Adrian died from the disease in 1999 aged 36. Sufferers who inherit PSEN1 from their parents usually die around the same age.
Daniel, who lives his with partner Jordan Evans and their twins Lola and Jasper, is trying to raise money to take his family on a final holiday before his memories fade.
He said: “I try not to think about it. I live day by day with both good days and bad days.”
“It does not just affect me, it affects everyone around me as well.”
“I do not know how long I have till it takes a real hold on me. I want to be as much of a dad as I can for as long as I can be.”
“As my memory fades I am hoping to create lasting memories for my partner and our children so that one day they can look back on the videos and photos of us all together and cherish them.”
“I remember my dad going through it in 1999. The doctors didn’t know he had Alzheimer’s at that time but it was horrible to watch.”
“I realized something was wrong at work when I struggled to grasp problems and concentrate. I was lethargic and couldn’t remember how things worked.”
“When I am asked about what the future holds I just say that I think about providing memories for Jordan and the kids. They are the ones who matter.”
Daniel, who suffers from short-term memory loss, confusion and problems with his balance, has been warned to expect the symptoms to accelerate because of his young age.
He was told there was a chance he had the condition when Jordan was four months pregnant in early 2016, but decided not to get tested at the time.
But after his twins’ first birthday, his symptoms started becoming more pronounced so he went to his doctor who told him he had been living with the disease for a year.
Tragically, he has been warned his two children have a 50 percent chance of being diagnosed with the disease when they reach their 30s.
They cannot be tested for the gene until they are 18 due to laws on patients finding out about genetic conditions.
Daniel’s brother Sean, 28, has already been tested for the disease and has been given the all clear but his younger brother Alex, 23, has decided he does not want to find out.
National Health Service worker Jordan, 29, said the family were now in a race against time to make cherished family memories before Daniel becomes too ill.
She said: “We had a suspicion something was not right but were praying that it was not this.”
“We were very shocked and devastated by the diagnosis. It was particularly difficult to hear that the children have a chance of getting it too.”
“We have tried to find out about getting them tested for the gene but they cannot legally be tested until they are 18 and they must make the decision for themselves.”
“Daniel’s dad died in 1999 but at the time the cause of death was put down as neurodegeneration on the death certificate.”
“Because of his age, the hospital kept samples of his brain for future research.”
“Daniel had a brain scan after he started feeling very lethargic in January 2016 and that’s when his dad’s brain samples were tested in a lab in Edinburgh and the results came back that he had Alzheimer’s and Daniel may have inherited the same gene.”
“Daniel found this out when I was pregnant but we didn’t want to find out for definite because it was a happy time.”
“When he lost his job in the summer because he was under performing we knew something wasn’t right so he went to the doctors and in September was told it was Alzheimer’s.”
“It’s been really hard for us but we are determined to live every day to the fullest.”
“We try and have some non-Alzheimer’s days when we do not talk about it. When the babies get older they can remember how great a dad he was.”
The pair, who met 12 years ago, have set up a Justgiving page to raise $13,000 to take their children on the trip to Disneyworld in Florida later this year.
Daniel also hopes to use the money to tick off a number of things on his bucket list, including to sky dive with his brothers.
Jordan added: “We want to raise as much as possible to have a trip as a family and create memories for the kids.”
“We were hoping to take them when they were older and can remember it, but that is not a possibility now.”
“It will mean a lot to be happy as a family, to look back and remember all the good times that we had.”
The couple have raised almost $10,000 since the page was set up on Tuesday.
Clare Walton, from Alzheimer’s Society, said: “Dementia is not a natural part of ageing and it doesn’t just affect older people.”
“Over 40,000 people under 65 in the UK have dementia, including people in their 30s and 40s.”
“The needs of younger people with dementia are very different to those of older people and there is a shortage of age appropriate services in the UK.”
“Alzheimer’s Society is currently funding research which we hope will improve diagnosis and support for people with younger onset dementia.”