A Skegness fundraiser is getting ready to face a tough challenge to help a little girl with ‘red-headed spirit’ get the treatment she desperately needs when she swims across The Wash later this year.
Claire Draper, will be attempting the 14-mile trial in August in aid of four-year-old Jocelyn Leaver, who is fighting ‘high risk Neuroblastoma’ - a rare childhood cancer.
She will be starting in Hunstanton and will finish the nine-hour ‘Swim for Joss’ back home in Skegness. She will be accompanied only by a support team, including a paramedic.
Claire, Director of Finance at Fantasy Island, said: “The challenge is to raise money for dear friends of mine who are trying to secure treatment they need for their beautiful and brave four year old daughter who is fighting high risk neuroblastoma; a rare childhood cancer.
“The swim is only possible because of the generous backing of the support crew who between them have committed a significant amount of time and resources by planning the route, providing the boat and giving medical support on the day”
Claire has already raised nearly £2,000 on her JustGiving page.
She said the initial fundraising had been ‘excellent’ and said the response to her Facebook page chronicalling her training had been ‘fabulous’.
On Saturday, Claire undertook a ‘successful’ practise swim from the Skegness wind farm back to the main beach - the full challenge will be five times that distance.
Claire said valuable lessons had been learned, adding that the swim was ‘tough’ and ‘choppy’.
“I’m glad it was though, because it’s prepared me to be better.”
We want to do the very best for our daughter and know that the cost of funding treatment can run into hundreds of thousands of pounds, but as parents we simply can’t sit back and wait for a relapse to happen.Cassie and Stewart Leaver, Jossie’s parents
On June 23, Claire will be taking part in the 10k Great East Swim, a big challenge on her route to her final ordeal.
Claire said Jocelyn, who has been fighting the neuroblastoma since November 2017 as a ‘bubbly, fun loving and very carefree child who is just happy’.
Stewart and Cassie Leaver, are now running a fundraising campaign, supported by charity Solving Kids Cancer, because Jossie may not be able to get immunotherapy treatment on the NHS as part of her standard treatment.
Jossie, described as a ‘real happy-go-lucky kind of kid’, first showed signs of illness shortly after her fourth birthday last August.
During her first week back after the August half-term, Stewart and Cassie noticed Jossie had developed a limp.
Initial blood tests showed she was anaemic and the family were told to go to accident and emergency.
It was then that the cancer was discovered and Jossie was further transferred to Great Ormond Street Hospital where Jossie was diagnosed with stage 4, high-risk neuroblastoma. Tests confirmed that she had a solid tumour in her stomach the size of a melon, and that it had spread to a third of her bone marrow. Jossie has already undergone several sessions of chemotherapy, surgery and radiotherapy with more on the horizon.
The family may, however, have to resort to clinical trials and treatments not available on the NHS to try and beat the cancer.
Solving Kids’ Cancer Europe says on its website that more than £114,000 has been donated. In a statement on the charity’s website her parents, who describe their daughter as having ‘red-headed spirit’ say: “We want to do the very best for our daughter and know that the cost of funding treatment can run into hundreds of thousands of pounds, but as parents we simply can’t sit back and wait for a relapse to happen.”
A video online describes how Jossie asks questions relating to her age, such as how old her brother Dougie will be when she’s seven, or if when she’s 10 she can go to Disneyland.
Mum Cassie says: “These should be the most simple questions to answer, but for us it’s incredibly hard because we don’t even know at this stage whether she’s going to reach the age of 10.”
The charity says that this kind of neuroblastome as a ‘high rate of the cancer returning, and if this happens, the survival rate is very low.
They say: “Relapsed neuroblastoma is particularly challenging to treat and the options are limited to clinical trials, in the UK and overseas. Many families, just like Jossie’s, will choose for their child to access a clinical trial, in the hope that it will prevent a dangerous relapse or get their child back into remission.
“It can cost hundreds of thousands of pounds to access a clinical trial overseas or treatment that is not funded by the NHS.”
Stewart and Cassie believe this treatment will give their little girl hope.
To follow and support Claire visit www.facebook.com/swimthewashforjoss
For more on Jossie Leaver’s story visit https://solvingkidscancer.org.uk/campaigns/jossie-leavers-journey/
To donate, visit www.justgiving.com/fundraising/swimthewashforjoss or www.justgiving.com/campaigns/charity/solvingkidscancer/jossieleaver