A former pupil of Longridge High School who has a fear of heights is aiming to carry out a reverse bungee jump this weekend in aid of the Huntington’s Disease Association.
Holly Johnstone’s mum Emma suffers from Huntington’s and the family have lived with the disease for a long time.
In fact, Holly was just six-years-old when she remembers being sat down by her parents and told that her mum Emma Wilton, had a condition called Huntington’s disease which would make her poorly.
She said: “I was too young to understand and I remember thinking it wasn’t that big a deal” recalls Holly, now 17, who lives in Brookfield, Preston.
“At the time, the symptoms my mum was experiencing were that her hands and arms were moving slightly every few seconds.
“However, the movement was so slight at that point, I thought it couldn’t be that bad.”
Little did Holly realise at the time that over the next decade, active mum-of-three Emma who was used to working two jobs at a time, would deteriorate so much, she would end up in a wheelchair and living in a care home.
Holly, who recently left Longridge High School and has a sister Katie, 20 and a brother Harry, 13, said: “My mum had lots of jobs. She loved children so worked at nurseries and she had also worked for agencies and Virgin Active and Asda.
“But as the Huntingtons got worse, my mum was able to do less and less.”
Huntington’s disease is an inherited condition which affects the brain and nervous system.
Over the years, Huntington’s took a grip and it got to the point where the family had no choice but for Emma to be looked after in a care home.
She said: “The condition is quite bad now and she is in a wheelchair the majority of the time. She can walk a few metres with help, but that is about it. Her speech is also very slurred and most of the time, it is difficult to understand what she is saying.
“What makes it particularly heartbreaking is that me and my brother and sister have a 50 per cent chance of getting it. My nanna had it as well and she died at the age of 47.”
Holly decided she wanted to do something out of the ordinary for the association and chose to face her fears by doing the jump and said: “I decided to do something special for the charity that helped my family and many other families that are going through the same thing. I am really scared of heights and don’t like climbing and if I am somewhere high, I start shaking with fear.”