A 26-year-old said he has chosen not to have children due to a hidden disease which claimed the life of his dad.
Adam Bowes was just 21-years-old when doctors told him he had a defective gene meaning he had the hereditary Huntington's Disease - which killed his dad in 2019.
The fatal disease, which stops parts of the brain working properly over time, is inherited from a person's parents and gets gradually worse over time. The life expectancy of someone with Huntington's disease is usually up to 20 years.
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At 23-years-old Adam started with symptoms including issues with his balance and co-ordination, cognitive problems and stiffness in joints as well as depression. Adam told the ECHO: "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 compare 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."
Describing the condition as Parkinson's, Motor Neurone Disease and Dementia "rolled into one", the family said people often mistake those with it as being drunk or "behaving inappropriately".
In 2001 dad Andy Bowes was diagnosed with Huntington's Disease. Within six months, he began to experience symptoms, from mental health issues to "aggressive" outbursts.
Living with the condition for eight years, Andy was then forced to give up work as an electrical engineer due to his deterioration and eventually had to be admitted to a care home.
Wife Jackie, from Widnes, told the ECHO: "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, Andy went on to live for 19 years but in December 2019, at the age of 50, he "had no quality of life" and 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 said he has decided not to have his own children due to the "hidden disease" due to the fact that those with the gene have a 50% chance of passing it on to their children.
Adam, who is using his time fighting for awareness, 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."
Speaking about the condition and lack of support and awareness, Jackie added: "I found myself apologising for Andy's behaviour in public. If he wanted to do something he had to do it there and then. It was distressing for everyone involved.
"Hospitals often aren't equipped to deal with people with complex conditions like this. That's why we rely on things like the Huntington's Association, they rely on donations, without that, people like us would be left in the dark with no support at all. Even the GP doesn't properly understand.
"Another concern is the lack of care and lack of local, suitable care homes. That's a huge worry. Also, 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."
More information about Huntington's and what to do if you have recently been diagnosed, can be found here.
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