In loving memory of Jossie Leaver

We are devastated to share the news that Jossie has sadly passed away.

Jossie's parents posted on Facebook and said: "There will undoubtedly be an enormous Jossie shaped hole in our lives forever, and we can’t begin to imagine how we will ever adjust to life without her. We are immensely proud that the world was a far brighter place for the 6 years she was in it and, despite the cards she was dealt, she was always happy, simple as that. Though, for now, this little super champ is needed for bigger and better things elsewhere."

Jossie's story

Jocelyn, affectionately known as Jossie to her family and friends, has been fighting high-risk neuroblastoma since November 2017. Her parents, Stewart and Cassie, chose her name because it means ‘cheerful’. Jossie is a happy-go-lucky child, always smiling and full of enthusiasm and red-headed spirit, despite her chemotherapy, daily injections, regular blood transfusions and endless hospital visits.

Jossie faces many more months of intensive treatment including further cycles of chemotherapy, surgery and radiotherapy. The treatment Jossie has to endure will cause painful short term side effects and potentially, long term health implications. Despite such an aggressive treatment regime for children with high-risk neuroblastoma, for almost half of those who become cancer-free, their cancer will come back.

This is why Jossie’s family are fundraising so that if the best options for Jossie are not available on the NHS, they have the funds secured to access them in the UK or abroad.

Stewart and Cassie 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. Through working with Solving Kids’ Cancer we are raising funds for Jossie’s potential life-saving treatment, and crucial research into this devastating childhood cancer.”

Their lives have been completely turned upside down; their dreams and ambitions for the future put on hold, yet Stewart and Cassie say: “Jossie continues to show more courage and strength than any four-year-old should ever have to. Whilst her red hair is gradually falling out, her cheerfulness remains.”

Back in August 2017, Jossie turned four. She had recently become a big sister to her much-loved brother, Dougie.

A few weeks later, she started ‘big school’ and suffered the odd cold and sickness bug – nothing out of the ordinary for a child of her age. However, during the first week back after the Autumn half term, her parents noticed that Jossie had developed a limp. She had also become increasingly tired and emotional – not “the usual Jossie,” – and was starting to lose weight.  

Stewart and Cassie took her to the doctors where initial blood tests revealed that she was anaemic. The family were told to go straight to their local Accident & Emergency department, where more blood tests were performed. The doctors suspected Crohn’s disease, colitis or glandular fever, so Jossie was admitted to hospital for further examinations including x-rays.

Over the course of a few days, Stewart and Cassie’s lives changed forever.

“As we sat on a bed in an isolated hospital room we received the devastating news that no parent ever wants to hear; our child has cancer. In particular, a very aggressive childhood cancer called neuroblastoma which affects only 90-100 children a year in the UK.”

The family were transferred to Great Ormond Street Hospital where Jossie was diagnosed with stage 4, high-risk neuroblastoma – the most aggressive form of the disease. Tests confirmed that she had a solid tumour in her tummy the size of a melon and that it had spread to a third of her bone marrow.

Within days of the diagnosis, Jossie became very poorly. She’d lost more weight and the pain started to spread to her knees and ankles. She was unable to walk more than a few steps or even summon the strength to play with her baby brother.

Jossie’s fundraising campaign

High-risk neuroblastoma has a high rate of the cancer returning, and if this happens, the survival rate is very low. 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. Supporting Jossie’s fundraising campaign will help ensure that if her parents choose this option for her, they are able to give their little girl hope.

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