Kenny & Lorraine's Story

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; when we meet up with friends who haven’t seen us for a while they 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.”

Shelly's Story

I don’t know where we would have been without Nicola, our Scottish Huntington’s Association (SHA) HD Specialist. She was always there for Gran, Mum, and the whole family. She is just brilliant, and would always answer our questions and see how we were getting on.  

But it’s not just about raising money, it’s about increasing awareness. Many people don’t know how severe Huntington’s disease is, and that the symptoms get worse and worse. 

This year I’m supporting SHA’s appeal in memory of my Mum, my Gran, and for all families who are affected by Huntington’s disease. I hope you will join me by giving to SHA and raising a Cup O’ Kindness for those you love.