A young Killylea woman, who lost her father to Huntingtons three years ago, has shared her relief after learning she has not inherited the gene for a disease which robbed her family of their darling dad.
Ashley Clarke is now looking forward with hope for a brighter future after an agonising wait for test results ended with the best possible news.
Dad Desmond died at Greenpark Nursing Home in Armagh on August 31, 2022, after 14 years following his Huntingtons Disease diagnosis in 2008. He was just 56.
When she spoke to Armagh I in May 2023, Ashley, who watched as her Desmond deteriotated with the brain disease as he approached his final days, said it had scared her senseless as “I felt like I was watching my own future”.
The brave young woman – who turned 32 in May – was devoted to her father and has dedicated herself to raise awareness of the debilitating disease.
The uncertainty has always been to the forefront of Ashley’s mind.
Huntingtons Disease is genetic and the only way Ashley would know if she would suffer the same fate was to get tested – something, she admitted, filled her with dread.
“When dad died, I think because of what I witnessed, I think it scared the life out of me because I felt like I was watching my own future and what might actually happen to me,” she had told Armagh I in 2023.
“I can’t speak for my brother, maybe he was thinking the same, but it just all came flooding back, those 14 years and what we’ve gone through as a family.
“My dad, my brother and I were on this journey and that was the end of it; it just felt like I was watching the future and I was sitting going, that could be me in that bed, and it could be my mummy and my brother and they could be sitting looking at me questioning whether or not to feed me – that’s a feeling that nobody should ever have to experience it. That’s a really weird feeling and it’s very overwhelming.”
Ashley has now braved her test and, after facing months of uncertainty, has received her results.
In an emotional post via social media, she has shared her good news – while thanking all those who had been there to offer support through those incredibly nervous days.
Describing the wonderful news as something which “changed everything”, she confirmed: “I tested negative for Huntington’s Disease. I did not inherit the gene from my father.”
And Ashley added: “Since March, I’ve walked through some of the heaviest days of my life. Each morning, I got up and faced the unknown. I went to work. I smiled when it was hard. I kept going.
“The past six months have tested every part of me — but they also revealed the strength I didn’t know I had. Resilience isn’t always loud; sometimes it’s just getting through the day.
“To those who stood by me — with a text, a visit, a late-night video call — thank you. You may never fully know how much your presence meant, but I will never forget it. You were my lifeline in the quiet moments of fear, doubt and waiting.”
Now, as she looks to the future, Ashley says she does so “lighter, freer and deeply grateful”.
“The fight taught me who I am,” she added. “And now, I live for what’s ahead.”
Ashley continues in her role and quest to raise awareness and help others – particularly young people whose lives have been affected by this cruel disease within their family setting.
When Desmond was diagnosed in 2008, Ashley and her brother, Ryan, took on the carers’ role – Ashley was just 14 at the time. She Googled what it all meant and inevitably was faced with internet horror stories.
Ashley and Ryan looked after their dad at home for eight years before he was eventually taken into Greenpark Nursing Home in Armagh, on a permanent basis, where he received excellent care.
“It was so scary,” she admitted. “I was seeing things like people hiding Huntingtons patients because they were ashamed, that people were thinking there’s something wrong with that family; that family’s got a defective gene, etc. I thought, it’s time to make a change, I’m going to help other people and not have it that 14-15 year-old kids are reading these scary stories.
“Thankfully we’ve come a long way since and awareness is getting better.”
Ashley has spoken openly of the times when her dad had been accused of being drunk in public which prompted her into creating her #imnotdrunk blog – the platform through which she this week shared her fantastic test results
When she spoke to Armagh I two years, Ashley had admitted that the potential of her own diagnosis later in life “scares me every day”.
“It scares me that I will some day possibly lose my voice and I will lose the ability to fight but I really, really hope that I have done enough, working with the community, working with different organisations, working with pharmaceutical companies.
“I really hope that I will have done enough to help somebody, help some people and maybe somebody else will be able to keep going in my place, if I’m not able to do that.
“If I am so incredibly blessed to test negative for this disease, I will never stop fighting for the people who do lose their ability to fight and their ability to use their voice because I know what it’s like.”
Fortunately, that fight can – and will – now continue.
Ashley had gone too work for the NI Huntingtons charity six months after graduating as a youth events and fundraising officer, describing it as “the most amazing job I’ve ever had, I loved every minute of it”.
She’s now involved with the Huntingtons Disease Youth Organisation, where she started the ambassador programme with ambassadors from around the world.
She has told her story at some of the world’s most influential pharmaceutical companies.
“If I can help just one person not be afraid and if I can make one person feel not alone, and help them to see all the amazing people out there to help and support them, then I’ve done my job.”
