A man has vowed to not have children after discovering that he has a hidden disease which killed his dad. Adam Bowes, 26, says it felt 'like a bomb going off' when he was told that he had Huntington's Disease, reports the Liverpool Echo.
The fatal disease, which stops parts of the brain functioning properly over time, is inherited from an individual's parents and gets gradually worse over time. The life expectancy of someone with Huntington's disease is usually up to 20 years.
Adam was informed that he had a defective gene when he was 21-years-old that meant he has hereditary Huntington's Disease. He said: "Finding out I had it felt like a bomb going off.
"But I've found support groups and more people in my age group and even though it's an isolating disease, you aren't alone. People don't understand unless you go through it.
"I can't help comparing myself to my dad but touch wood, my symptoms haven't progressed in the last year. There's no cure, but there's more treatments now, there's more hope for us.
"I feel like there's no-one in my age group representing me and whilst I'm able to talk about it, I will."
Two years after his diagnosis, Adam started experiencing symptoms including issues with his balance and coordination, cognitive problems and stiffness in joints and depression. His family described the condition as Parkinson's, Motor Neurone Disease and Dementia 'rolled into one'.
They also added that people often mistake those with the disease as being drunk or "behaving inappropriately". The family's relationship with the illness goes back to 2001, when dad, Andy Bowes, was diagnosed.
Within a few months of being informed that he had Huntington's Disease, the father began displaying symptoms including mental health issues and "aggressive" outbursts. Andy's condition then continued to deteriorate as he was forced to give up his job and was eventually admitted into a care home.
His wife, Jackie, said: "He carried on working for eight years with the right medication, he was very clever, used to design aircrafts, but eventually he could no longer do the job.
"I couldn't manage his behaviour, he was displaying a lot of aggression and violent outbursts. When it was aimed at our son Adam I had to get help and he was admitted to a care home, initially for respite, and then full-time.
"He never came out. He was in a care home in St Helens but they struggled to manage his behaviour, he managed to escape twice.
"The police picked him up but thought he was drunk, he wasn't - he had Huntington's. We moved him to Liverpool, the closest specialist care home to us and he was really looked after there."
Despite being given a 15-year life expectancy, the father went on to live for 19 years. However, in December 2019, aged 50, he tragically died surrounded by his loved ones. Jackie added: "He couldn't do anything for himself, he lost the ability to swallow and couldn't communicate.
"He was lying in bed with such a cruel illness and the last five days of his life were absolutely horrendous. He fought and hung on to the bitter end."
Adam says that he has decided not to have his own children due to his diagnosis and the fact that those with the gene have a 50% chance of passing it on to their children. The 26-year-old is now committed to use the rest of his time to raise awareness around Huntington's Disease.
He added: "I'm convinced there's celebrities out there living with it but won't talk about it. We need to talk, make people understand."
His mother is also keen to spread awareness around the deadly disease which has already taken her husband from her. Jackie said: "It's a hidden disease, people don't like talking about it, it's a taboo subject and we need to change that.
"A lot of people think symptoms only develop when you're older but you can get early onset that Adam has but also juvenile version so kids can get it and we need to raise awareness of that."
Don't miss the latest news from around Scotland and beyond - Sign up to our daily newsletter here .
