24-hour triathlon fundraiser for young girl's life-changing cerebral palsy op
A 24-hour triathlon fundraiser for a five-year-old girl with cerebral palsy is hoping to raise money for a special operation that may help her walk one day.
Olivia Jukes Jones is from Woodside, Telford, and has cerebral palsy.
Her family are aiming to raise around £60,000 for Olivia to undergo Selective Dorsal Rhizotomy (SDR) surgery – a surgical procedure that aims to reduce spasticity (muscle stiffness) in the lower limbs.
Due to Olivia's Gross Motor Function Classification System (GMFCS) being a level four – which means she has greater functional limitations – the family are having to find extra funding.
Lee Delves, whose son goes to school with Olivia, has organised a 24-hour triathlon using a ski machine, bike and rower at Ore Fitness Community in Telford to help raise some money.
Participants will be trying to hit 2,000,000 metres on Saturday when the challenge takes place from 10am.
Siobhan Gylnn, Olivia's mom, and her dad, Lewis Jukes Jones, will be heading down to the gym on Saturday to show their support, and Lewis will be taking part in the challenge.
Siobhan said it has been a difficult journey with Olivia's condition since day one, but that she is a cheeky and cheerful little girl.
"She had an appointment at Alder Hey Children's Hospital in Liverpool and the consultant said she was a good candidate for something called the SDR surgery," Siobhan explained.
"However the NHS only cover levels 1-3 and she is level four so we would have to fund the whole thing. They only had an estimated amount so we are aiming to raise £60,000.
"It will just make everything nicer for her, and hopefully get her walking one day."
Olivia was born at 28 weeks, and Siobhan said the journey since then has been a hard one but the family always stay positive.
She was born prematurely at 28 weeks in May 2016 weighing 3lb 2oz. She was in hospital for just over 10 weeks and had to battle various infections such as sepsis, necrotizing enterocolitis (nec), chest infections and more.
In December 2016 Olivia had an MRI scan and was later diagnosed with Bilateral spastic cerebral palsy.
"It's been difficult since day one really," she said. "Olivia was actually born at 28 weeks and that's why she has cerebral palsy. Hopefully the main goal is that she might take her first steps on day.
"She is a full time wheelchair user. She is the most mischievous and cheeky little girl, she is very outgoing. She lives life to the full.
"She has got a real positive outset and doesn't really think twice about being in a wheelchair. Obviously there are some things we help her with, and either myself or her dad will carry her.
"But anything that she struggles with we always turn it into a positive."
Lee Delves, who is organising the fundraiser on Saturday, said that Ore Fitness Community, of which he is a member, is always looking for community causes to support.
"I noticed that Siobhan had put a fundraiser together to go towards Olivia's operation so I suggested we did a 24 hour challenge at the gym to raise money," he said.
"We are doing a 24 hour triathlon on pieces of equipment including the rower, ski machine and exercise bike. We are aiming to reach 2 million metres which is quite a stretch but we will aim for it.
"We have people coming in throughout the 24 hours to take part and support including gym members, friends, family. Olivia's dad Lewis will be taking part and the family will come down to watch."
Visit www.justgiving.com/fundraising/ore24hourathon2021 to support Olivia's journey.
