When she was first diagnosed in 2016, Romy tried not to allow the disease to affect her family’s daily life and continued to take her daughter Sofia to dancing and her son Joe to football.
“We carried on and were brave about it,” she said. “Because what’s the point of just ruining every day?”
But Romy said the disease had “massively” affected her life more recently.
Her two adult children, who live at home to care for her, said they had become “a bit more hands-on” as there were “things Mum can’t do anymore”.
“I just do the very minimum, because it’s taken a lot,” Romy said.
She said living with Huntington’s had affected her emotionally and psychologically but it had not affected her “Austrian spirit”, which “wouldn’t be crushed”.
Sofia, 21, said her Mum was her “hero” and “the bravest person in the world.”
“We’re best friends, two peas in a pod. She just means the world to me.
“Just seeing what she goes through every day is so motivating.”
“When Mum has her bad days, that’s when we have our bad days, because seeing her upset or in any pain or discomfort kind of puts us in the same way.”
She added: “We obviously get really upset and emotional but I think we all try and not show that in front of Mum because we want to be as strong as her.”