Hannah spoke at our 2025 Community Conference about how the support from the charity has changed her and her family's lives.

From the moment Stu was diagnosed, the Huntington’s Disease Association became my lifeline. They guided us, supported us and held my hand for every single step.

Hannah, previously a healthcare assistant in a mental health hospital from Weston-Super-Mare, is a full-time carer for her husband Stu as well as working as a teaching assistant for SEN children. They have two children, Harry and Bella-Rose. The whole family has been supported by the Huntington’s Disease Association since Huntington’s disease became a part of their life.

Stu was diagnosed with Huntington’s disease in 2017 after a serious accident in work. “We started making plans for our future. Life was really, really good. I literally couldn't have been happier. But then little things started to change,” Hannah said. Stu had become a little bit clumsy. They didn’t think much of it at the time as they had two little ones just 18 months apart, so they put it down to tiredness.

Knowing what could be his fate, they went straight to the GP and got a test for Huntington’s disease. Just a few weeks later, they got his test results. “Honestly, on that day, my world stopped. I couldn't process what I was hearing and I couldn't understand it. All our plans, all our dreams, everything had just stopped and I didn't know how to even go forward. But at the same time, something else changed inside me. I knew I had to fight. I had to protect my husband, my children and our future.”

Hannah threw herself into learning everything she could about Huntington’s disease. Due to previously working in a psychiatric ward, Hannah had a level of understanding of neurological conditions but not the complexities around Huntington’s disease and the impact it would have on her and her family.

It wasn’t just Stu who would be affected by the disease. Hannah knew she would slowly lose her husband, she would become a carer, and her two young children were now at risk of the disease. “The fear for our children who are now also at risk absolutely crippled me,” she said.

They were honestly the darkest days in my life. But it was then that the Huntington's Disease Association came into my life and it honestly changed everything.

Hannah was put in touch with her local Specialist Huntington’s Disease Adviser. “She gave me all the tools I needed to be a successful caregiver for my husband. She helped me access services, how to adapt to a home, and how to give me the confidence to ask for help,” Hannah continues.

From then on, Hannah reached out for more help. She contacted her local branch in Bristol. “The Bristol branch connected me with local families living in the same reality. Together, we formed a local support group, and from this day on we still meet once a month. They've become an absolute anchor to me.”

Stu’s condition declined and their family had to move into an adapted home. The place was sparse and they had no flooring or even an oven. “Once again, the charity stepped in to help and funded our oven, and to me, that oven meant everything.”

Once Hannah’s children had turned eight, they were able to access the Huntington’s Disease Youth Engagement Service. “I can scream and shout about them [HDYES] because they are just incredible,” Hannah says. Both children were told about Huntington’s disease, how it would impact their dad and their lives by their Youth Worker.

He told them about their 50:50 risk and in such a compassionate and caring way that now neither of my children feels scared of what might come in their future

During the pandemic, the charity helped to source a laptop so they could access school during lockdown. “That laptop became essential for school and to keep them connected. Their online meetings gave my children a voice. They were able to cope and their fears were a little less because of that connection,” Hannah says. They now have regular meetings at school and attend summer camp with HDYES every year. Hannah says that “It gives them the chance to be around people who understand them and they don't have to feel alone.”

Hannah became a Huntington’s Disease Association Ambassador. “I can honestly say it's one of the greatest honours of my life,” Hannah says. It gave her the confidence to share her story which helps others feel like they are not navigating Huntington’s alone. “I just wanted to give something back,” she continues.

They've given us more than just help, they've given us hope. My husband, at just 42 years old, now requires 24-hour care from washing to eating; he needs me by his side. I know this now means that his life is limited, but even now he remains fearless. He is a true warrior. Together, we push through the darkness and somehow we always find that light. That light comes from you. From the Huntington's Disease Association. From the Advisers. From the Youth Engagement Service. Because of you, my husband's life and my children's lives are brighter. You've helped me to shape strong, brave and resilient young people that I could not be prouder of.