Heather and friends spring into action for families impacted by Huntington’s disease

“My lovely grandad Bob isn’t able to walk or talk now but his eyes lit up when I showed him the photos of us fundraising for Scottish Huntington’s Association. Then he lifted his arm to give everyone a wee wave of thanks.”

The words of student Heather Train (24), from Midlothian, who with seven fellow members of the Robert Gordon University trampoline club raised more than £250 for Scottish Huntington’s Association.

Unable to go ahead with their planned sponsored bounce due to Covid 19 restrictions, the Robert Gordon University Trampoline Club opted instead for a virtual challenge that involved clocking up 20km by walking, running, cycling or rowing.

“In competitions we do 20 trampoline moves so we decided to do 20km for 20 moves,” said Heather, who is in the final year of a Management with Marketing degree.

“We’ve supported a number of charities and this time, because it’s my last year with the club, I was really keen to do something for Scottish Huntington’s Association. We’re a small club but we still managed to raise more than £500 in total which was shared between Scottish Huntington’s Association and another nominated charity.

“Some club members had never heard of Huntington’s disease while others knew a little bit about it because of a storyline in House, the US hospital drama series. I explained how the disease affects my grandad and our family and everyone was really supportive and happy to get involved.”

Huntington’s disease is a complex neurological condition caused by a faulty gene. As physical, mental and cognitive symptoms progress, people develop uncontrolled jerky movements, their mobility is reduced and the ability to speak and swallow is lost. The disease also changes thinking processes, leading to dementia and an inability to plan and organise, and mental illnesses such as depression and, in some people, psychosis can develop.

To compound the devastating toll on families still further, each child of a person with Huntington’s disease is at 50/50 risk of having inherited the faulty gene that causes it.

Bob was diagnosed more than 20 years ago and is no longer able to walk, talk or eat. He is looked after in a care home and even though he is unable to communicate, Heather knows he enjoys time with his family.

“Grandad sleeps a lot now and is fed through a tube,” said Heather. “It’s hard for us all to watch how much the disease has changed him over the years. When I was young, I would spend a lot of time with Grandad, he would pick me up from school and take me to my dance class, always having a joke with me and kidding around. He would always make me smile and we love him very much.”

Heather is inspired by her dad Kenny to do what she can to raise awareness and support other families impacted by Huntington’s disease. Over the years, Kenny has taken on sponsored challenges including My Zen Run and the Great North Run, covering hundreds of miles and raising more than £12,000 for Scottish Huntington’s Association.

The charity provides lifeline services for families across Scotland through its nationwide network of Huntington’s disease specialists, youth advisors and financial wellbeing officers. It supports people who have the disease, carers, family members at risk of having inherited the faulty gene, and young people growing up in families impacted by Huntington’s disease.

“We’ve all had great support from Scottish Huntington’s Association,” said Heather. “My dad goes to Scottish Huntington’s Association family conferences and I also went along to a few Youth Service events when I was younger.

“Because Grandad has the disease, we both know there’s a chance that the gene has been passed down through the generations but for now, like my dad, I’m loving life. After graduating, I’m off to Florida to work at Walt Disney World for the summer. I’m seizing every opportunity to do as much as I can.”

Scottish Huntington’s Association Chief Executive Alistair Haw said: “May is Huntington’s Disease Awareness Month, which brings the global Huntington’s community together to build wider understanding about the disease and reduce the stigma that leaves many families isolated and misjudged by members of the public, health practitioners and social care professionals.

“We send our very best wishes to Bob and thank Heather and Kenny for all that they do to support the wider Huntington’s disease community by raising much-needed awareness and funds to help Scottish Huntington’s Association reach every family that relies on our specialist services.”

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