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Tragically, cancer remains one of the biggest causes of death to children under the age of 15. This is why we are committed to funding vital research to create a future where every child and young person survives their cancer diagnosis.
We believe that no parent should be told that their child has cancer, and no family deserves to spend Christmas without their loved one due to this cruel disease. That is why research is still urgently needed.
Your donation this Christmas will enable more life-saving research and support for families like Neive’s at every step of their cancer journey – helping them cope with the physical and emotional challenges that cancer brings.
Neive was 5 years old and had just started Year 1 when she was diagnosed with high-risk Embryonal Parameningeal Fusion-negative rhabdomyosarcoma. Before this, she was an energetic, active, and happy-go-lucky little girl who had never stepped foot in a hospital since she was born. In late August 2022, she began having disturbed nights, which progressed to headaches, a squint, double vision, subtle facial palsies, and generally just not being herself.
Neive went on to have nine rounds of IVA chemotherapy at the local children’s cospital, followed by six weeks of proton beam therapy at another hospital. Despite the toxicity and painful skin reaction to the protons, Neive tolerated the higher rays of proton reasonably well. Her strength and determination were admirable, and her will to live shone through brighter than anything. However, her appetite was severely affected, and she became solely reliant on her NG tube for nutrition and hydration.
In June 2023, things took a turn for the worse for Neive. She became unwell and generally not herself, starting to display symptoms that she had presented with upon her diagnosis. She began having severe frontal headaches accompanied by nausea and vomiting, disturbed nights, and was withdrawn from everything she used to love doing. Sadly, Neive’s end-of-treatment scan in September 2023 showed widespread leptomeningeal disease of her rhabdomyosarcoma.
As the weeks went on, Neive began to deteriorate and fell into a deep, peaceful sleep. I would lay with Neive during the days and tell her all about the wonderful times we had had over the years, how so very proud I was to be her Mum, and that she didn’t need to keep battling anymore. Now was her time to rest and be peaceful. Neive felt the warm sunshine shine on her beautiful golden hair through the window for the last time in late October, and on 24 October 2023, at 7:07 pm, Neive was set free from this terrible disease and drifted off peacefully to heaven with me laying next to her, holding hands.
Sarah, Neive’s mum
Neive's story
Neive was diagnosed with Rhabdomyosarcoma on 16 September 2022 when she was just five years old. Tragically Neive did not survive her diagnosis.
Read Neive's storyWhat is rhabdomyosarcoma?
Rhabdomyosarcoma is a type of sarcoma cancer that affects the muscles that are attached to the bone. The tumours occur mostly around the head and neck.
Find out more£5.5 million co-fund pioneering research programme
Leading charities Children with Cancer UK and Cancer Research UK will co-fund a major £5.5 million research programme to advance precision medicine for children and young people whose cancer has returned.
Find out moreWe're here to help so please don't hesitate in contacting us:
info@childrenwithcancer.org.uk | 0800 222 9000 |