“Don’t lie down to it”: The McCann Family’s story of love and life with Huntington’s disease
For Huntington’s Disease Awareness Month, Eddie’s story is one of fierce love, resilience, and determination – not just to care for his daughter Nicole, but to make sure people truly understand the person behind the condition.
Nicole was only 18 when she chose to be tested for Huntington’s disease. The condition had already devastated her family. Her grandfather died young, at just 47, and later her mother developed the disease too. At the time, Eddie admits, the family knew very little about Huntington’s.
“We knew nothing about it,” he says. “All I really understood was that it was a faulty gene.”
But Nicole wanted answers about her own future.
“The good thing about Nicole is she’s always had a good head on her,” Eddie says. “She wanted to know. She was thinking about things like whether she wanted children one day. She didn’t even have symptoms then – she just wanted to understand what was ahead of her.”
When Nicole’s symptoms started in her early twenties, it was devastating for the family.
“I was trying to tell myself, ‘No, it’s no,’” Eddie recalls. “But eventually you’ve got to accept it is what it is and prepare for what’s coming.”
Now 34, Nicole has lost many of the physical skills most people take for granted. Huntington’s has affected her movement, speech and swallowing, and for the past five years she has lived with Eddie and his wife, Tracey, who care for her full time.
Yet when Eddie talks about his daughter, it’s not the illness that defines her.
“Nicole’s attitude has been great,” he says. “She’s made the most of everything she’s had. She still loves shopping – honestly, every time we get out she somehow manages to come home with trainers and tracksuits.”
At home, daily life revolves around careful routines and constant adaptation. Eddie describes cupboards filled with different cups to help manage Nicole’s swallowing safely.
“There’s a lot of thought process that goes into every daily activity,” he explains. “Even helping her keep her independence – if Nicole wants to walk to the toilet, we’ll support her rather than just doing it for her.”
Eating has become one of the biggest challenges. Huntington’s disease causes involuntary movements and difficulty swallowing, which can make mealtimes stretch for hours.
“We were spending all day eating trying to get calories into her,” Eddie says. “She was choking and struggling, but Nicole was determined not to let it stop her. She’s amazing.”
He is quick to praise Tracey’s dedication.
“My wife has been amazing,” he says. “Making sure Nicole’s fed properly, taking her medication, managing everything – she’s got it spot on.”
Caring can be exhausting. Both Eddie and Tracey worked while supporting Nicole, often returning home from work straight into hours of hands-on care.
“When you come back from work, it’s straight into helping with dinner, cleaning up, medication, tube feeding – there’s a lot involved and it can be exhausting,” Eddie says. “We don’t really have time for ourselves anymore, but we don’t mind putting things on hold. We’re only an aid for her just now and we’ll do the best we can.”
The family says support from the Scottish Huntington’s Association and healthcare professionals has been vital in helping them cope.
“Scottish Huntington’s Association that has helped us to learn about the disease and how to cope,” Eddie says. “Anything we’ve struggled with, there’s always been someone from the charity to help us.”
He remembers one occasion when occupational therapists arranged specialist equipment Nicole urgently needed.
“We needed a chair that cost thousands, and they came in and got it sorted for her,” he says. “And our Huntington’s disease specialist is amazing. Just having people come to see Nicole, noticing wee changes and helping us understand what’s happening – that means a lot.”
Eddie also wants more awareness of Huntington’s disease among the public. Nicole’s symptoms are often misunderstood by strangers.
“When she was out shopping and struggling with her balance, people thought she was drunk,” he says. “That’s not nice for Nicole.”
“People think Nicole doesn’t understand because of how she looks or speaks, but mentally she’s still Nicole. Up here,” he says, pointing to his head, “she’s the same as you or I.”
For Eddie, respect and dignity matter enormously.
“People shouldn’t shout at her or talk down to her,” he says. “There’s nothing wrong with her hearing. Just talk to her normally.”
Despite everything Huntington’s has taken, family life still has moments of joy. Nicole loves television, relaxing in the garden on sunny days, and spending time together.
And if Nicole was to give advice to anyone living with Huntington’s disease?
“Don’t lie down to it.”