A FLINTSHIRE company boss has been inspired to run his first marathon in memory of a ‘beautiful, bright and fun-loving’ young woman who died suddenly at the age of 21.
Paul Hollingsworth will run the Chester Marathon on Sunday October 6 in aid of Ataxia UK and there to cheer him on will be his good friend Jeremy Salisbury whose daughter, Scarlett, had a rare condition called Friedreich Ataxia and died in March.
Ataxia is the name given to a group of neurological disorders which affect balance, coordination and speech.
Scarlett, of Colwyn Bay, was diagnosed with Friedreich Ataxia when she was eight, which is the most common form of Ataxia and is characterized by an inherited mutation in the frataxin gene which leads to reduced levels of the protein essential for cell survival.
Earlier this year, days after Scarlett had celebrated her 21st birthday with a special meal and night away in central London with 15 of her closest family and friends, including Paul and his wife Suzanne, she started to feel unwell.
The former Rydal Penrhos pupil was weeks away from gaining a degree in Media Studies at Bangor University and had a dream job in theatre marketing firmly in her sights when she was taken to Glan Clwyd Hospital with heart problems associated with her Ataxia.
Her dad, Jeremy, Mum, Lowri, and older brother Henry, 24, were with her when she died three days later, despite all the very best efforts of the medical teams around her.
Paul, 54, managing director of Hollingsworth Group in Sandycroft, said: “Scarlett, or Scally as we all called her, was exceptional – sharp, witty, fun, engaging – and was held in such high regard by everyone who knew her.
“I have been very good friends with Jeremy for 25 years and as she grew up, Scally also became a good friend, with both me and my wife Suzanne.
“Scarlett was very much into her fashion and her, my wife and Scarlett’s mum Lowri would always be chatting away together about the latest shoes and handbags they had seen. Jeremy and I would tease them all about it.
“We have had such lovely and very happy times together and we miss her very much.”
Ataxia symptoms generally worsen with time and while Scarlett never allowed her condition to define her life, more recently she had used a wheelchair and mobility scooter to get around day to day so she could live as independent a life as possible.
Her dad and Paul’s friend, Jeremy, who is the Director of Salisburys Chartered Accountants based in St Asaph, said: “Scarlett was a beautiful girl. The memory of her which I always keep close to me is of going to pick her up from university, when I would be waiting in the car outside the front of her flat, and then she would come round the corner, in her wheelchair, with a huge pile of dirty washing on her lap and an even bigger smile on her face.
“We’d get everything in the car, I’d give her a kiss and then off we would go home, chatting about all sorts of things.
“The immediate grief of her passing has begun to ease but we are just left with an incredibly deep sadness which I accept will never go. Sadness for us and sadness for her.
“She was full of fun, loved her family and her many friends and was a real enthusiast about everything she did. Always smiling, she never complained about what she had to deal with and got on with everything with such uplifting positivity.
“So many people came to us after she had died to let us know how loved she was. She had a very natural gift for drawing people to her and they loved her. You would see her in the middle of the room and people would just be gathered around her, them all chatting away. She was very, very sociable.”
Paul’s marathon challenge has already smashed through the original £2,000 target he hoped to raise for Ataxia UK, a charity which funds research into the group of Ataxia conditions, which can also be caused by other things such as brain damage, diet and drug side effects.
The charity also works to support those dealing with the devastating impact of the disorders including their families and carers.
Recent studies suggest there are around 10,000 adults and 500 children in the UK with a progressive ataxia.
Paul, of Gorsedd, near Holywell, who is dad to Gemma, 28, Barney, 24, Louie, 12, and Lottie, five, said: “I ran regularly for about 15 years and then gave it up for a while before picking it up again about a year ago.
“I have run half marathons before but preparing for the marathon has been tough and I am finding it really hard mentally when I reach the 20-mile point of my training runs and it’s like I can’t think straight.
“There’s always a moment when I think, why am I doing this? But Scarlett gives me a focus at that point and I think that will be really important on the day of the marathon itself too. I shall think about her a lot.”
Jeremy spoke of the importance of raising money for Ataxia UK and in praise of his friend’s marathon challenge. He said: “We all firmly believe they will find a cure but it currently feels a bit like things are not really progressing fast enough, despite the best efforts of those focused on the research.
“I think what we need to do now is keep trying to raise awareness of Ataxia and this will help to build momentum behind the urgency to try and find a cure.
“We know this hasn’t come in time for Scarlett but I will never tire of talking about her and going through what has happened to us, in the hope this might help.
“We shall be there at the marathon to cheer on Paul and we are so thankful for everything he and others are doing to remember our beautiful Scarlett.”
Paul now aims to raise £4,000 for the cause and to sponsor him, go to https://uk.gofundme.com/f/paul039s-campaign-for-ataxia-uk