The Hope in Huntington’s: Ellis’ story

A university student. An avid athlete. And now the latest member of her family to be diagnosed with Huntington’s Disease, a decade after it first struck them. Ellis Kerton shares her story of her battle to keep the ‘Hope in Huntington’s’.

In 2007, a family from Northumberland received an answer to a question that had been hanging over their heads for a long time. Though comforting, that information would change their lives forever. Ellis Kerton’s grandmother, who had been visibly deteriorating for some time, was diagnosed with Huntington’s Disease.

The disease is an inherited neurological disorder which causes progressive mental deterioration resulting in death of brain cells. The earliest symptoms are often subtle problems with mood or mental abilities. Then, as the disease advances, jerky body movements start and the person becomes unable to talk or swallow food. There is currently no cure.

Ellis said: “They always say that it’s probably one of the worst forms of a disease as you never know when it’s going to hit you, but when it does it attacks you quite aggressively and, within 20 years of it starting, really you’re going to die.”

There are approximately 6,000 people currently suffering from Huntington’s in the UK and, for every person diagnosed, another four people are at risk. This is because each child of a parent with Huntington’s has a 50% chance of inheriting the faulty gene. It doesn’t skip a generation so, if a child tests positive, they will at some stage develop the disease.

After her father was diagnosed, Ellis decided it was time for her to get tested.

“I always wanted to know all my life if I had it because there’s always that question hanging over you – the unknown was torture and driving me crazy,” she said.

“I always thought that not knowing was quite scary and that I’d rather know, so last summer I got tested and I tested positive.”

At the age of just 19 and beginning her second year at the University of Lincoln where she studies Accountancy & Finance, Ellis admitted that it was a lot to handle.

“My heart sank initially and I was a bit numb,” she said.

“I think my head was just a bit all over and I was crying at random things that I wouldn’t normally.

“The hardest part was coming out and telling my friends and family because I knew they’d take it worse than me.”

With strength in their veins, the whole family refuse to let this hold them back or get the better of them and instead focus their attention towards fundraising for the main charity – The Huntington’s Disease Association (HDA).

The organisation works to provide specialist expertise to empower patients and families to manage the condition, and reduce the extreme fear and isolation they often feel.

Last year, the Kerton family were nominated for, and even went on to win, the ‘Most Inspirational Volunteer’ award at the charity’s awards evening which celebrated the hard work and support given by volunteers.

Commenting on this achievement, the HDA said: “They truly were worthy winners and we were delighted for them – we are incredibly grateful to Ellis for everything she has done to support the HDA over the years.”


A year on from her diagnosis, Ellis says she has never looked back, and she still aims to remain positive throughout the whole journey.

“A lot of people thought it might affect my mentality, especially at university and being away from home, but it’s just pushed me further – I just feel so much lighter and able to live my life more now,” she said.

“Until they can give me a cure, there’s nothing really I can do apart from fundraise and raise as much awareness as possible, so I take quite a positive attitude towards it.”

If you’d like to find out more about Huntington’s Disease, or you’d like to donate to the charity, visit their website by clicking here.

Featured image: Lesley Falkous/ Facebook.

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