Katie Johnstone was just nine years old when her mum was diagnosed with Huntington’s disease.
She watched her mum slowly fade away as her personality switched and a year after her death, she has vowed to raise awareness of the disease as she prepares for a half marathon to raise funds for Huntington’s Disease Association.
Katie’s mum, Emma Wilton was diagnosed in 2003 after experiencing twitches in her fingers.
The disease gradually took over her and she had to reside in Bridgeway Care Home, in Ribbleton, for the last eight years of her life, until she died last June, aged 44.
Katie, of Ribbleton, says: “It is hereditary as my grandmother - my mum’s mum Beryl Wilton - had it. She died in 1994.
“When mum noticed twitching in her fingers she had to go through genetic counselling at Manchester St Mary’s Hospital before she could have blood tests. Because of the symptoms, doctors already knew, but blood tests confirmed it.
“Mum was only in her 30s and I was nine. I was quite young and not really aware of what was going on. I remember mum and dad sitting us down and telling us mum was ill, but she didn’t look ill at all. I didn’t see the bigger picture.
“It is really awful as you can’t do anything to stop it and it just gets worse. It was quite upsetting watching my mum go through that as she deteriorated.
“Huntington’s disease destroys the brain cells, so her personality changed and she became more angry. She had physical movements, where her fingers, toes and faced twitched. It can impair your thoughts and you make rash decisions, so she became impulsive and bought things without thinking.
“She had to give up work and her driving licence was taken off her as she was not safe driving.
“My dad, Billy Johnstone, became her full time carer and my younger sister and I were supported by Young Carers, where we would go out on trips.
“In the later stages, it really changed her, so she had to go into Bridgeway Care Home for the last eight to 10 years of her life.”
Katie adds that as Huntington’s Disease as genetic, she has the option to be tested, along with her young brother and sister.
She says: “As part of the testing process you have to undergo three or four sessions of counselling to make you want to go through with it. After that, you take a blood test and get the results.
“My sister, Holly, 21, has been tested and she has got the gene. There are drug trials so we hope to get her on there.
“We just have to offer emotional and physical support to make sure she is okay as it could change everything for her.
“I have also been tested and I have not got the gene.
“It is a relief and feels like a weight lifted off my shoulders but I do feel guilty that I am okay.”
Katie, who works for Lancashire County Council, is preparing for the Great North Run in Newcastle this Sunday to raise funds for Huntington’s Disease Association.
She adds: “I don’t think enough people know about Huntington’s Disease. When I was younger, people used to laugh at my mum and think she was drunk and that really upset me.
“It is a rare illness so I want to make more people aware of it.
“I also want to raise money for a charity which has helped my family massively. I thought it would be nice to give something back and at the same time, raise awareness of the charity.
“This is the first time I have done a half marathon, but I am an avid runner as I am a member of Preston Harriers.”
To sponsor Katie visit www.justgiving.com/fundraising/runningforacure-hd.
What is Huntington's Disease?
Huntington’s disease is a condition that stops parts of the brain working properly over time.
It is caused by a faulty gene that results in parts of the brain becoming gradually damaged over time. It gets gradually worse over time and is usually fatal after a period of up to 20 years. The symptoms usually start at 30 to 50 years of age. These include: difficulty concentrating and memory lapses; depression; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; mood swings and personality changes; problems swallowing, speaking and breathing and difficulty moving.
The condition is inherited from a person’s parents. If a parent has the Huntington’s disease gene, there’s a 50% chance of each of their children developing the condition – affected children are also able to pass the gene to any children they have. Unaffected children can’t pass the condition on. There’s currently no cure, but treatment and support can help reduce some of the symptoms.