Dawn shares her story of life with Huntington's in her family and the impact the charity has had on them all.
For me, from the moment I first spoke to the Specialist Adviser, Poppy, I felt like I was having arms wrapped around me, a shoulder to cry on, she’s just always been an absolute rock.
Dawn works for a charity looking after disabled children. She is mother to Bethanie, now 28 and Freya, now 18. Huntington’s disease has impacted their family for many years. Her late husband, Rob was diagnosed not long after Freya was born.
It has been a difficult journey for Dawn’s family. After many years of declining mental health issues, Rob was signed off on long-term sick. Looking for answers about his health and having not spoken to close relatives for over 20 years, Rob researched his family history. “Huntington’s disease”, his grandfather’s death certificate said.
Rob immediately went for testing. He didn’t have much counselling and struggled to cope with all of this news on top of his own diagnosis. As a wife and mother, Dawn did what she could to keep a happy family all while working and dealing with Rob’s diagnosis, his depression, psychosis, suicidal thoughts, and lack of support from health care professionals. “You just go into survival mode,” Dawn shares.
I was in the psych ward, begging them to speak to his neuro psychiatrist in Birmingham. They said he doesn’t have Huntington’s disease, it’s a mental health problem.
Dawn got in touch with the Huntington’s Disease Association and had regular contact with her Specialist Adviser, Poppy, and the Youth Worker for Bethanie who provided support for them. Dawn was struggling with healthcare professionals not providing adequate support or addressing Huntington’s as a reason for his cognitive decline.
The charity is absolutely essential. With the help Poppy gave me, I could research NICE guidelines so I could make complaints about how he was being treated. It’s vitally important. If I’d been left with local services, I think we would just have been adrift.
Telling the children
Dawn and Rob waited a year before they told Bethanie, then 11. She was heartbroken. As Rob’s disease progressed, they got more involved with the Youth Engagement Service - HDYES. Bethanie attended a camping trip set up by HDYES. It was the first time she met other young people affected by Huntington’s disease. It was a chance to be young and forget about what is going on at home. After attending this event, Bethanie started really engaging with the charity, advocating for the disease and volunteering with young carers.
Dawn and Bethanie attended the 2014 annual general meeting held by the charity, where Bethanie was able to spend some time with the youth worker. At this moment in time, there was only one youth worker covering all of England and Wales.
They are very skilled at understanding how to support young people. They give them the opportunity to develop skills and build their confidence and resilience.
Bethanie’s strength grew and grew and at 17 she was a board member of the Huntington’s Disease Youth Organization HDYO. She even went on a solo trip to Vatican City to meet the Pope with HDYO. Dawn says’ “I was proud of her resilience and ability to cope so well.”
She did volunteering for a while, then got a job with the carers agency while she was at college and uni. Her dissertation was about fair access to uni for young carers and other disadvantaged people.
Support a decade later
Freya had a very different experience, she only knew growing up with Huntington’s disease. Freya was only 9 months old when they found out about Huntington’s. More withdrawn, she initially didn’t want to engage but Dawn put her in touch with Jack, their Youth Worker.
She doesn’t see him as someone telling her to do stuff. He’s encouraging and supporting her and as time’s gone by, she’s come out of her shell.
After this, Freya also started to also engage with the services, joining a panel of young people called HD Youth Voice to work with the charity on projects. She attends meet-ups, online calls, and trips away with other young people and the HDYES team.
The energy and support the team brings has helped with her confidence. They’re looking at recording films. Somebody like Freya who wouldn’t have chosen those sorts of courses at colleges, it will be really important to build those skills.
Dawn’s children grew up with Huntington’s in different ways. They were supported by the charity in different ways. But the outcome was the same. Two people that have become advocates for Huntington’s disease, the charity and other young people.
The Huntington’s Disease Association has been there for all of Dawn’s family, understood their different needs and supported them all in different ways.
HDYES are very skilled at understanding and how to draw young people out and support them. With the projects, where young people support young people, it’s vitally important. The youth team gives young people opportunity to develop life skills.
What do you wish people knew about Huntington’s disease
I still get people saying did he really have Huntington’s because he didn’t have the movement. That really frustrates me. I wish personal and professionals understood it’s a triad of impairment and people present very differently – I wish they would read up about the disease more.
Huntington's Disease Awareness Month 2026
This year's theme is Behind the Gene - The invisible challenges and untold stories of Huntington’s disease.
This May, we are showing the many faces and many lives behind Huntington's disease and what they wish people knew. Too often, people affected by Huntington's disease find themselves educating the public and healthcare professionals about their condition.
As part of this campaign, our aim is to educate more professionals about Huntington's disease. To do this we have created a new factsheet that is being distributed to GPs and health care settings across England and Wales.