A southport woman who sufferers from Huntingtons Disease is holding a special charity night later this month in memory of one of her fellow sufferers, who sadly passed away two years ago.
Kirsty Skinsley, a 27-year-old from Southport suffers from the debilitating terminal hereditary degenerative neurological disease – but says she is determined to make the most of things by raising as much money as possible to help fund research into fighting Huntingtons.
The charity night she plans to hold will be in memory of 17 year old Ellie Mae Morgan who passed away from Junior Huntingtons in 2014. Ellie’s mum Sam is supporting Kirsty’s campaign and is even taking part in a special HD calendar Kirsty produced in January.
On Saturday November 26 Kirsty hopes to welcome as many people as possible to the Southport Masonic Hall on Dukes Street from 3pm for a day of live music and entertainment.
Kirsty said: “I have huntingtons disease which is a terminal hereditary degenerative neurological condition.
“I got it from my dad and my brother has it also – I’m fifth generation in my family and I had to find out when I was 20, having had symptoms since he age of 19.
“As of a few years ago I started getting involved in a lot of charity work – a guy on Facebook named Kris King was doing a huge charity event that was almost superhuman – doing 22 lots of 100 mile bike rides and 12 marathons without a day off.
“He went round the coast of the country and raised over £25,000 for Huntingtons.
“I messaged him to see if I could help and to amazement he asked me to join him for the last 2 and half weeks to raise awareness and money.
“I decided to push myself and try and get on my bike for a while despite the fact I hadn’t been on one since I was a small child. I ended up doing over a 100 miles which isn’t much for the average person but for me with my symptoms and medication it meant the world to me.
“I ended up winning a your heroes award and attended the ceremony with my loved ones. it was awesome and gave me the charity bug.
“Kris King didn’t stop there. He set up his own foundation called Phils kids. Phil, who was his male role model and a father figure to him, was his best friends dad.
“All proceeds goes to HD positive families so they can have treatment to have HD free babies.
“This is what all proceeds of my night are going to.
“Through the coast hunt I met a lot of HD affected families. one of these families is like my family now. they live in Hartlepool. Sam Carter is a beautiful woman inside and out and so strong. her daughter Ellie sadly passed away two years ago from junior Huntingtons disease at the tender age of 17.
“Her mum bravely came a few weeks after her passing to be a part of my charity HD calendar so I really want my night to be in honour of Ellie
“I’m hoping this event will raise a lot for such an important cause.”