Dawn’s story: How the Huntington’s Disease Association has supported a mother and her daughters 

 Dawn, a charity worker and mother of two who lives in Warwickshire said

“From the moment I first spoke to Poppy, my local Huntington’s Disease Association advisor, I felt like I was having arms wrapped around me. She was really non- judgemental, a shoulder to cry on. She’s been an absolute rock.”
 
“Without Poppy’s help, I think we would have been completely adrift. She armed me with the knowledge to get the right care for my husband, Rob.”
 
Dawn contacted the Huntington’s Disease Association for advice and support when Rob received a diagnosis of Huntington’s. He had discovered by accident that his family was affected by the condition.
 
“He’d had some mental health problems and had taken long-term sick leave from his job. To pass the time, he started researching his family history. He hadn’t seen his father or anyone from that side of the family for over 20 years, so he began with internet searches.”

It was a huge shock when Rob saw his grandad’s death certificate, which said he’d died of Huntington’s Disease.  “It was absolutely horrendous,” says Dawn. “Rob had no idea that his family was
affected.”
 
Rob decided to have the test for the faulty gene that causes the condition, and was devastated when it came back positive. 
 
“He was already in a fragile mental state. Now, he went into psychosis and was having suicidal thoughts. Meanwhile, I was trying to keep going with work and family life. Bethanie was 10 and Freya was just 11 months old.
 
“I went into survival mode. I couldn’t bear the thought that my girls could possibly have this awful disease. If you spend too much time thinking about it, you’ll go under.”
 
The situation got worse when doctors insisted that Rob was suffering from a mental health problem, rather than Huntington’s. They didn’t realise the condition can affect mental health, as well as causing cognitive impairments and involuntary movements.
 
“At that point, Poppy’s support was vital,” says Dawn. “She gave me tips so I could research NICE guidelines and make sure Rob got the right treatment.”
 

The charity has also supported Dawn’s daughters at different stages.
 
“We told Bethanie about the diagnosis when she was 12,” says Dawn. “She got wonderful support from Adam at the Huntington’s Disease Association. He was the charity’s only youth worker at the time.”
 
Freya was just 11 months old when her father received his diagnosis, so she grew up knowing about Huntington’s. “When she was 13, her dad died, and that’s when she needed more support,” says Dawn.

“Jack, a Huntington’s Disease Association youth worker, has been amazing. He encouraged Freya to become part of the HD Youth Voice group, which has really helped her come out of her shell.”
 
For Dawn and her daughters, the charity’s support has been essential. “Huntington’s is often hidden in families and it can feel very isolating,” says Dawn.

“When nobody else has understood us, the Huntington’s Disease Association has always been there for us.”