Courageous Holly Johnstone, 24, of Preston, was diagnosed with juvenile Huntingdon’s disease only months after the death of her mum, Emma, in June 2018
A young woman who was diagnosed with Huntingdon’s disease after the tragic death of her mum from the condition has spoken of her ordeal.
Courageous Holly Johnstone, 24, of Deepdale, Preston, was diagnosed with juvenile Huntingdon’s disease only months after the death of her mum, Emma, in June 2018.
Her mum, Emma, had suffered with the disease for many years, but died after her condition suddenly took a turn for the worse in January 2018.
Devoted daughter Holly cared for her mum, until Emma’s condition deteriorated to the point where the mum of three had to be taken care of in a care home, ending up wheelchair bound and dependent on a feeding tube, before passing away at Royal Preston Hospital.
Now Holly is planning on doing a tandem skydive in her mum’s memory to raise funds for the Huntingdon’s Disease Association.
Paying tribute to her mum, who was only 44 when she died, Holly said her ‘lovely mum’ was hard working and much loved by everyone.
Holly told Lancs Live : “She was a really good mum, and she was lovely. Everybody loved her. She worked three jobs just so she could get us the things we wanted. She was suffering for a long time, and she was diagnosed with it when I was six. Her condition started to deteriorate in January 2018. She was a really lovely person.”
Yet within months of her mum’s tragic death, Holly began to experience symptoms, and was diagnosed with juvenile Huntingdon’s disease in late 2018 at the Walton Centre in Liverpool.
The terminal condition was causing Holly to have symptoms like dropping things and choking on food. The debilitating disease sees brain cells slowly wasting away and can prove fatal within 15 to 20 years of diagnosis.
She said: “I found out I had it as well. I was clumsy, and dropping things, and had a lot of balance issues. I was dropping a lot of things, and I was choking on food and drink.
“At first, no one would believe me as I was so young, and Huntingdon’s disease is more common later on in life. It’s rare for someone so young to have it.
“I only have about 10 to 15 years left and I’m not going to lie I’m terrified.”
She says her sister, Katie, 28, has not been diagnosed and brother Harry, 19, has not been tested for it yet.
“Luckily, my sister doesn’t have it and my brother hasn’t been tested for it.”
“It affects my balance and my legs, and it gives you uncontrollable movements.”
Although Holly says she is coping with the disease, she is scared of going outside, since many onlookers are not aware of her condition.
She added: “I have been getting scared when I walk out, as I keep getting stared at, with people talking about me, and they don’t understand. I’m constantly being mistaken for being drunk or on drugs all the time which is really frustrating.
“It is an illness, so I would ask people to not judge a book by it’s cover when you see someone, as you never know what someone is going through.”
But despite her fears and her ordeals, the plucky 24-year-old is planning to raise awareness for the Huntingdon’s Disease Association by doing a charity tandem skydive on April 18 this year at Skydive North West in Grange over Sands, with a friend who wishes to remain anonymous.
Despite the fact that she is ‘terrified’ of heights, Holly is determined to overcome her fears in memory of her mum by doing the charity sky dive, which will be from 15 000 ft up to 120 miles per hour.
Praising her friends and family for the support, she added: “It’s been really nice to feel that I have got so much support. I have had so much support from my friends and family – and that is so nice to have.”
Explaining how important it is to her to raise awareness of the disease, and to mark the memory of her beloved mum, Holly said: “To be honest, I will be terrified of heights, but I really want to raise awareness of this disease, and to do this in memory of my mum.”
Praising her mum’s ‘beaming smile’, Holly said, on her Just Giving Page: “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 having her hair and makeup done and getting flowers. She loved making people laugh.”
“I’m doing a tandem sky dive at 15,000 feet up to 120 miles an hour. I know I’m going to be screaming my head off during this one. I just want to raise money for the charity that is close to my heart that will save lives in honour and memory of my mum Emma. I just want to make her proud. And possibly help them find a cure to save my life and everyone else who’s suffering.”
For more information about Huntingdon’s disease, you can visit the Huntington’s Disease Association’s website.
To find out more, and contribute to Holly’s Just Giving campaign, visit her page here.