'It was too late for my mum, but I am still hopeful': Preston woman told she will die from same disease as her mum will 'try anything' to save her life

A young woman from Preston who has been told that she will eventually die from the same incurable illness that once killed her mum is raising money for research into the disease.

By James Holt
Friday, 23rd April 2021, 5:12 pm
Updated Friday, 23rd April 2021, 5:14 pm

23-year-old Hollie Johnstone spent most of her young life watching her mum Emma suffer from cruel Huntington's Disease, meaning she had to step in and become her full-time carer at aged six.

And just a few short months after she lost her 10-year battle aged 44, Hollie was handed the devastating news that she also carried the same affliction and had a life expectancy of just 15 to 20 years.

The Prestonian is now keen to raise awareness of the condition and fundraise for further research as it starts to take over her life and cause her speech, memory and coordination to deteriorate every day.

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Hollie lost her mum Emma to the same condition that she now lives with

And she wants to encourage people to "stop judging a book by its cover" after being mistaken for being drunk because of her difficulty walking.

Speaking to the Post, Hollie, 23, said: "I always knew deep down that I had the gene inside of me but I just wanted the confirmation and to know it for good. When I got the diagnosis, it made me feel closer to my mum.

"When my mum was diagnosed, I was six years old and the whole family had to be carers for her. I was doing this from six years old and learned to grow up very early. We cleaned her, made sure she was eating, changed her clothes and took her out until eventually she ended up getting too unwell and was moved to a care home nearby.

"No matter how ill she got or how little she could do, the second I saw her, her face lit up and she had a huge beaming smile. She loved the little things in life and making people laugh.

Hollie has been told she will have 15 to 20 years to live with the disease

"When I was 18 I was told I could find out if I had the gene or not and I had always wanted to get tested because my mum had left it way too late, so I got the results just before my 19th birthday and I was terrified."

Huntington's Disease is hereditary, with a 50 per cent chance that a child born from a parent with the condition will also suffer from it.

The neurological condition stops parts of the brain from working properly over time and has an average lifespan of 20 years, according to the NHS.

But Hollie is remaining hopeful that trials and research into treatments could see her condition reverse in the years to come and give her a longer shot at life.

Her mum Emma died aged 44 after a decade long battle with Huntington disease

Hollie, who has worked as agency staff at Preston North End, Blackburn Rovers and the Macron Centre in Bolton, will walk with the help of a wheelchair from Preston to Blackpool next month, May 1, to raise money for the Huntington's Disease Association.

She said: "It attacks your brain cells and doesn't replace them at the same rate so you begin to deteriorate. I have already seen I am struggling with my mobility, eating and drinking, my memory and coordination which is scary.

"My memory has been getting really bad and I fall over and stumble a lot. My mum was such a positive and caring woman and I feel like I am just like her in so many ways.

"I am devastated but I won't let this be the end of me. I want to keep looking for treatments because even though it might have been too late for my mum, but I am still hopeful that there will be treatments available for me."

Hollie as a teenager hugging her mum, who was living in a nearby residential home when she deteriorated

As well as raising vital funds for the Huntington's Disease Association, Hollie wants people to be aware of the disease and be less judgemental of others, as she is often mistaken for being drunk or laughed at.

Her developing condition means she often needs the help of a walker or wheelchair, experiences memory loss and has body spasms.

She added: "Most people don't know enough about the illness, and people always assume I am drunk or on drugs. I want people to know not to judge a book by its cover because you never know what someone is going through.

"People see me struggling to walk or slurring my words and I am discriminated against because of it. People are ignorant and I want people to know more about it and know there are other sufferers out there.

"There is not enough funding for this disease through the NHS, so it all relies on funding and fundraising from charities."

Donate to the Just Giving page to support Hollie on her walk next month and follow her story.

She says she is 'devastated' but remains positive for the future

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