Aiva and family swing into action after unexpected diagnosis

It was only after a chance remark by a friend that Joanne decided to visit her GP, followed by an appointment with a genetic specialist who confirmed the diagnosis.

“Mum has had depression and anxiety since 2018 and over time we’d noticed her slightly erratic movements. But we’d never heard of Huntington’s disease and weren’t aware of any family history of the condition,” said Aiva, who lives in Lanarkshire and works as a mortgage advisor.

“It was a huge shock and we were all devastated, but Mum’s biggest concern has always been what her diagnosis means for me and my two sisters because of the hereditary risk.”

It was dad Phillip who made the call to Scottish Huntington’s Association to find out how best to support Joanne and their three girls.

“I don’t know what we’d do without Dad – he and my mum have been together since they were 16. School sweethearts. He just swung into action to make sure we had the information and specialist support we needed from Scottish Huntington’s Association. We’ve also moved into a bungalow because that will work better for mum longer term. Dad wants to do everything possible to make things as good as they can be.”

The family is supported by a Scottish Huntington’s Association HD Specialist, who visits them at home, and Aiva and her sisters also have a Specialist Youth Advisor from the charity.

“I want to be strong for my sisters because I’m the oldest but I do worry about what could lie ahead. Kevin, our Specialist Youth Advisor, is great. I can talk to him about anything at all and ask questions that I don’t want to worry Mum and Dad with,” said Aiva.

“We’ve also been to the charity’s Family Gathering events. It’s good to catch up with other people, learn from their experiences, and find out about the latest research.”

Not one for standing still, Aiva dived into fundraising almost immediately, and with her two aunts and a group of friends raised over £3000 last year by taking on the Supernova run at the Kelpies.

Then the Martin family went full steam ahead with plans for something bigger – a gala ball in aid of Scottish Huntington’s Association at the Georgian Hotel in Coatbridge this April.

“Now It’s all about fundraising to raise awareness and help to make sure all families have specialist support,” said Aiva.

“We’ve never done anything like this before but tickets have already sold out – the support has been amazing. We’re having a meal followed by a DJ, an auction and a raffle with great prizes that have been donated to raise as much money as possible.

“I posted about it on my Facebook page and had lots of messages and offers of help. People who knew Mum from school got in touch and it’s been great to hear their stories. Most of them had never heard of Huntington’s disease but they were very interested and wanted to know more about it.

“It’s important for people to understand how this disease changes families so right now we’re focusing on the positives and doing what we can. I’m not going to let the time pass.”