The Courier & Advertiser (Perth and Perthshire Edition)
Daughter is dancing for beloved dad lost to cruel family gene
With a family history of lifechanging Huntington’s disease, Suzanne Armit was already questioning whether she would be able to reach milestones such as getting married or having children.
But when the 30-year-old from Rosyth finally took the test to see if she carried the faulty gene responsible for the illness, she received a shock result.
“My result was negative, I don’t carry the faulty gene,” she said.
“I actually didn’t take it very well believe it or not because I had almost convinced myself that I had it.”
Ms Armit has a family history of the disease, losing her father to it in 2022.
She remains a committed campaigner and fundraiser, helping to bring scores of Fifers to Glasgow this month for a dance-a-thon event in George Square.
She wanted to get married and have a family of her own but realised she might not be able to do that if she had Huntington’s.
Her dad, Thomas, 61, was diagnosed with the condition in 2004.
She said: “My nan, his (dad’s) mum, found out that she had Huntington’s disease in 2003.
“She had no idea it was in the family – no one knew. At the time we knew nothing about it, or what it was, and just through finding out more about it, we learned it was hereditary.
“The next year my dad got tested.”
Ms Armit, who took the test in January 2018, has a partner Andy and a stepdaughter, Annabella, 8.
After processing the result of her own test, she was able to concentrate even more energy on her dad.
“It was a case of then thinking well my dad is going to become unwell one day so I can focus on him,” she said.
Huntington’s disease is caused by an inherited faulty gene that damages the brain and can lead to loss of ability to walk, talk, eat, drink and swallow.
People with the disease may develop recurring jerky movements they can’t control, early-onset dementia and mental illness such as depression and anxiety.
Each child of a parent with Huntington’s is at 50% risk of inheriting the disease.
Ms Armit said her dad didn’t start developing symptoms until he was in his late 40s.
“It was movements – his feet started to go first.
“He would be sitting in his chair when he would suddenly give a little kick every so often, a minimal twitch.
“But it was frequent enough for us to wonder what was happening.”
The family started noticing other changes too.
For example, she said routine suddenly became very important for her dad: “He liked to have a Red Bull every morning and it had to be on a particular shelf in the fridge.
“If it wasn’t on that shelf or in the fridge, it would become a disaster.
“Time was a massive thing for my dad – if anything suddenly changed, he became agitated and frustrated.”
She said the deterioration was slow to begin with but got worse as the years went on.
He developed difficulties with swallowing food, lost the ability to communicate and eventually went into a care home around eight years ago and was there until he went into hospital in 2021.
He passed away in February last year.
The Scottish Huntington’s Association supports just over 200 family members in Fife, including people with the disease, those at risk, young people and carers, and the same number in Tayside.
Nationally around 800 people in Scotland have Huntington’s disease with a further 3,200 believed to be at risk of developing it.
For the past 20 years, Ms Armit has been supported by the Scottish Huntington’s Association and was delighted to be asked to get involved with the organising of this year’s Dance 100, a fundraiser and awareness event organised by the Association.
She attended the event for the first time in 2022 and was back again this year at the dance-a-thon which took place in George Square on May 14.
Around 50 people from the association’s Fife family branch attended the event, which aims to increase understanding about the devastating condition, including Ms Armit and her relatives.
The event last year raised £22,000 for the association.
Ms Armit said: “You basically dance to 100 songs which are played continuously by a DJ throughout the day.
“It was amazing from start to finish and I absolutely loved it.
“I think it’s important to help families affected by Huntington’s disease come together.”