Today is the launch of SHA’s Cup O’ Kindness seasonal giving appeal to help fund lifeline services for families all over Scotland. Life has changed for everybody as a result of the Coronavirus pandemic – and for families with Huntington’s disease it means they are relying on SHA more than ever.

For Kenny and Lorraine Crichton, from Dunbartonshire, having a dedicated HD Specialist makes a big difference as they face the challenges of Huntington’s disease together. They are sharing their story as a message of friendship to the HD community and to encourage people to support the campaign.

Lorraine turned 50 knowing she was in the early stages of Huntington’s disease, and in the five years since then she has lost a lot of control over movement and her speech is now affected.

Sometimes the struggle to get the words out is too frustrating so, even though she has plenty to say, Lorraine often turns to husband Kenny, 54, to do the talking for them both.

Their close relationship and determined spirit make for a formidable team as they face the impact of Huntington’s disease together.

It was more than 30 years ago when they first got chatting in a local pub. Lorraine remembers liking the look of Kenny straight away – “He was just back from Ibiza so he had a really good tan!” she says.

They went on a date a week later, and the following year as Lorraine was coming to terms with her test result, Kenny was by her side.

He’s been there ever since. In 1996, their daughter Ashleigh was born and soon after the couple surprised guests at their baby’s christening ceremony by announcing they were getting married on that day too.

“It was also the same date as my parents’ wedding anniversary which made it even more special,” said Kenny.

“I knew nothing about Huntington’s disease when we got together and we decided to get on with life in the hope that it would be a long time before any symptoms started. Now it seems to be progressing fairly quickly; friends who haven’t seen us for a while can be quite shocked by the changes in Lorraine.”

As the symptoms became more severe, Lorraine, who loves socialising and keeping busy, had to give up the job she loved working behind the bar in their local bowling club, and she now uses a wheelchair when she goes out.

“Lorraine carries on with life and never complains. I really admire how she deals with what she has,” says Kenny,

“Kenny moans more than I do!” says Lorraine. “That’s true,” agrees Kenny.

“It’s never easy but the pandemic has made it harder,” he continues.

“I’m used to going out to work but I was furloughed until recently which meant I was home all day, every day, while Lorraine misses meeting up with her friends once or twice a week as she usually would.

“I do get frustrated, for example if Lorraine drops something. I have to remind myself that the mess doesn’t matter, we can always tidy it up.

“The HD Specialists from Scottish Huntington’s Association really help. They understand what families are going through and make sure all the support and information is there for them.”

Looking to the future, Kenny and Lorraine have the worry of knowing their daughter Ashleigh, 24, is at 50% risk of having the same faulty gene.

“Ashleigh’s test has been delayed because of coronavirus, which is difficult because she’s ready to know now. We’re all hoping that Lorraine is where the disease stops for our family.”

To watch Kenny and Lorraine’s video and find out more about the campaign, visit https://hdscotland.org/cup-o-kindness/