"I was 24 when doctors confirmed I have what killed my dad - I felt relief"

"I was 24 when doctors confirmed I have what killed my dad - I felt relief" Farah Renshaw, 24, from Greater Manchester, has tested positive for the cruel disease that killed her nana, auntie and dad over 17 years Growing up, Farah Renshaw always knew her family was different. While other children's grandparents took them to the park or baked with them in the kitchen, her nana couldn't speak or move. Nobody ever sat Farah down and explained why — but even as a small child, she knew something was different. As she got older, the pieces began to fall into place when the health of her nana and auntie declined before losing their fights in 2008 and 2011 respectively. When Farah was just ten years old, her mum and dad sat her down on the sofa and gently broke the news - he was going to become unwell, just like her nana and her aunties had been. The disease woven through her family was Huntington's - a merciless, rare inherited brain disorder that gradually breaks down and destroys nerve cells, robbing sufferers of their movement, speech and independence. Over a heart breaking 17-year period, Farah, from Salford, Manchester, watched it take her nana, her auntie, and ultimately her dad, who died in December 2024. From the beginning, Farah's parents were unflinchingly honest with her and her younger brother Louis. They made clear that each of them carried a 50/50 chance of having inherited the same fatal gene - and that they would never know for certain unless they chose to be tested when they were older. For years, that uncertainty hung quietly in the background of Farah's life. But a year and a half after losing her dad, the 24-year-old made the courageous decision to confront her reality head-on and get tested. At 9.30am on May 26, Farah sat in Saint Mary's Hospital in Manchester to hear her results. When doctors confirmed she had tested positive for the Huntington's gene, she didn't fall apart. Instead, she experienced an overwhelming sense of relief. She said: "The constant like wondering, 'oh, what if, what if,' and not knowing has been worse for me than finding out. I know that sounds really daft. I think unless you like have been through something similar, it's hard to understand like that that's how you would feel. "I was like, 'Right, but now I can get my life on track and I can sort myself out and figure out what I want to do with everything'. I know I'm a positive person, and I have such an optimistic life that I knew if I was going to get a positive test, I knew that I was ready to do things like this. "I knew that I wasn't going to sit in a dark corner for the rest of my life feeling sorry for myself, cause that's not the type of person that I am." Farah's childhood in the shadow of her father's Huntington's Disease For Farah, learning about Huntington's wasn't a sudden revelation that altered her world - it was woven into the fabric of her childhood. Her father was the youngest amongst his siblings, which meant his symptoms started emerging while Farah was still young. By the time she was ten, her dad received his official test results, coinciding with the death of his sister, who also had the condition, from cancer in 2011. He broke the news carefully to Farah, telling her that he would eventually become unwell like her aunties and nana. Farah said: "My mum told me to go and sit with my dad, because they were sat on like opposite couches. And they basically just explained that he was going to be like my aunties and how my nana was. They didn't say like it's Huntington's disease because I was only 10. "From the get-go, my parents were really, really honest. They told us it was genetic, but that it was a 50/50 chance, so we'd never know unless we chose to get tested when we were older." During Farah's teenage years, her dad's condition deteriorated rapidly, particularly throughout the COVID-19 lockdowns. Together with her mother, Farah took on the role of primary carer, juggling university coursework and her social life around her dad's increasingly demanding needs. She said: "It was so hard to deal with on a constant daily basis. Me and my mum dealt with a lot together. We would plan our nights out around each other so somebody was home with my dad." Eventually, however, it became unsafe for her father to remain in the family home, and they faced the devastating decision to place him in a care facility in August 2024. "Putting my dad in the nursing home was harder than when he died" Farah said: "Putting him in the nursing home was harder than when he passed away. It was absolutely dreadful. The guilt around it was awful." Yet the move brought an unexpected silver lining — freed from the exhaustion of round-the-clock home caregiving, the family were able to enjoy more meaningful quality time together. Just months later, on 23 December, her father passed away suddenly aged 55 from aspiration pneumonia — a frequently occurring and life-threatening complication for Huntington's sufferers, caused by a loss of their ability to swallow and cough effectively. Despite the heartbreak, seeing her father lying on his bed with his hand still warm gave Farah a reassuring sense of closure. She said: "He was so still, and he just looked like he was asleep. It was the most at peace I'd seen him for years and years, because his movements were so extreme. It was just really peaceful." After spending a year grieving the loss of her father, Farah resumed the process of being tested for the Huntington's gene. Farah's road to diagnosis and sharing her experience on social media In the UK, children of parents with Huntington's disease can choose whether they wish to be tested for the gene. If a child over the age of 18 opts for genetic testing, they must consult a specialist counsellor who will support them through the decision. Farah initially began this process in May 2024 before her father moved into the care home, but put it on hold due to the strain of her father's care and subsequent passing, before returning to complete her final test result appointment a year later in May 2026. The 24-year-old is now awaiting a referral to the Huntington's team at her local hospital and has stated she will opt in to any available clinical trials. Farah is now harnessing the power of social media to raise awareness about Huntington's disease. She said: "I think Huntington's disease is one of the cruellest diseases that there is on the planet. I think it's a mixture of like Alzheimer's, MS, motor neuron disease and Parkinson's as well. It's a mixture of all of those diseases put into one cruel disease, and you've got this short life expectancy and the potential of passing it on to your children. "So for me, I'm really trying to get to an audience now where they don't have a clue about Huntington's disease and I want to educate how bad Huntington's disease actually is." Since sharing on TikTok, Farah's original video discussing her decision to undergo testing has been watched more than 200,000 times and hundreds of individuals have shared their own experiences in the comments and privately with her. She said: "I was really nervous posting that first video... But I just thought, 'Oh it really doesn't matter as what as the impact I can have on other people.' So yeah, that's why I've decided to do it, and honestly, I did not imagine the reaction that I've had. I feel so lucky and grateful." To discover more about Huntington's Disease visit Huntington's Disease Youth Organization.