The Olivia Rose Fund is a Special Named Fund at CCLG raising money for research into Wilms' tumour, in memory of Olivia.
Olivia was 3 years old when she was diagnosed with Wilms' tumour. Her mum's, Aimee and Kerry, share her story…
Pre-diagnosis family life was busy, Olivia attended nursery twice a week and spent time with her grandparents at least once a week. When not at nursery we would take Olivia to moo music class every week where she would love to sing, dance and dress up to that week’s theme. This was usually followed by a lunch date with Mummy, which she loved to go on, especially when Mama would meet her as a surprise. Olivia also enjoyed gymnastics once a week, where she learned to roll and tumble, and she also enjoyed going to soft play centres and trampoline parks regularly, where she would meet her friends.
Olivia did not present in the usual way for Wilms’, there was no bump to one side, and Olivia had the usual larger toddler tummy. The week prior to our holiday, Olivia was seen by a GP as she had complained of pain in her armpits. There were no other symptoms, and she had a thorough check and was deemed to probably have an outgoing viral infection.
Olivia’s journey started in Kos where we were on holiday. She became unwell, listing to one side and her tummy was very enlarged. Following a visit to Kos general hospital we were advised to get a flight home and take her to see someone. We then took her to St Peter’s Hospital, where we were told Olivia had cancer and it was suspected that it was Wilms’.
Olivia’s journey was very complex the first time round as her cancer had already spread to her lungs and her spine, which caused compression in her spinal cord. This meant that she needed emergency surgery as she lost the use of her legs and bladder quite quickly. Due to her surgery and change in mobility, it meant that we were initially inpatients across three separate hospitals for the next six weeks.
The remaining treatment plan for Olivia was as outpatients, to maximise her recovery from her spinal injury. We opted to take her to The Royal Marsden for weekly chemotherapy sessions although some could have been done locally at St Peters’. This meant that Olivia was able to have weekly sessions with Izzy and Jen (OT and PT). Just six weeks after that initial operation where we told Olivia may never walk again, she took her first few steps independently!
Due to Olivia’s initial presentation, her treatment plan also included radiotherapy. This included 17 planned sessions which would treat her whole abdomen, pelvis and the affected area of her spine. Thanks to Kim (Senior Radiographer) and Lucy (Play Specialist), Olivia was able to complete all of these sessions awake with their support, even doing the last five of them with a fractured arm!
During her initial treatment plan, Olivia experienced several unplanned hospital admissions, including stays over Christmas and on her birthday. Despite these setbacks, she coped very well with treatment whilst learning to sit, crawl, stand, and walk again, and also retraining her body to use the toilet.
Olivia relapsed just 9 weeks after finishing her treatment. The cancer had come back in her lungs and had also spread to her liver. Her second plan was much more intensive, with all of her chemotherapy taking place as inpatients. This meant that for each cycle we were in for 6 days at The Royal Marsden.
Olivia also had further radiotherapy to her lungs over 14 sessions. She also had high dose chemotherapy with a stem cell transplant using her own cells. We were told to expect to be inpatients for up to six weeks following the high dose, as it can make you very poorly. Olivia was discharged in 21 days as she recovered so well, despite having some side effects from this treatment.
Following 14 months being cancer free, Olivia sadly relapsed again in December 2025. Her cancer was back in her right lung. Given all of the radiotherapy she had previously, further treatment of her lungs wasn’t possible. However, Olivia was able to have ⅔’s of her right lung removed under Brompton Hospital, removing both the tumour and a good margin around it. She then underwent 6 cycles of chemotherapy as an outpatient, where each cycle would be over an 8 day period. During this time, Olivia was able to attend school remotely.
Olivia was then back in remission in June 2026. Following her bell ringing and line removal in July, Olivia became wobbly on her feet. She had urgent scans which showed that she had metastasis on her brain, and also a suspected metastasis on her right lung again. Days before she could start treatment, she passed away peacefully surrounded by her family.
Olivia was the most amazing little girl, she was very witty often leaving us all in stitches with her quick wit. She loved to make others smile and laugh, and she could always be found singing and dancing without a care in the world. Olivia was a kind and caring little girl with a massive creative streak. She was also head strong and determined to do things in her own way, something that really helped her throughout her journey.
She was the bravest person we’ve ever met, she faced so many challenges throughout her life and nothing stopped her.
Olivia loved cats and everyone who has ever met her, however brief, knows this! She loved to make her own cats, Gus & Coco, toys and would often decorate their cat tree with homemade toys. She was incredibly creative and curious, she wanted to know how everything worked and would ask endless questions, she loved learning about the world and everything in it. Olivia loved to craft, and despite owning a lot of dress up costumes including cat ones, she would always enjoy making more collars and ears out of paper and card! She even made a working treat dispenser for her cats using empty toilet rolls and a bottle.
She was also a collector with an impressive collection of soft toys! Being a cat lady, she had 120+ soft toy cats all in varying sizes, types and shades. Her favourite animal was a tiger, cheetah or lion depending on the day you asked her, and she wanted to look after cats when she grew up. Olivia also loved to write and would often write stories about super cats and under water sea cats.
Olivia loved the outdoors and no matter what the weather was she wanted to be outside - either on her scooter or her bike, which would always have at least two cats in the basket for company. She loved being in the woods and at the seaside, with Brighton being one of her happy places. We would often visit the aquarium and spend time on the pier, where she would always have whippy ice cream no matter the weather!
Setting up this fund means everything to us, it allows us to honour our daughter Olivia and the journey she had. She was the most empathetic person in our lives, and this is something that she would have wanted us to do. This allows her kindness and empathy for others to live on, leaving a beautiful legacy.
The fund allows us help to improve outcomes for children in the future, like Olivia, who have Wilms’. Wilms tumour affects around 80 children each year in the UK, making it one of the rarer childhood cancers. We want to help fund further research into this type of cancer so that new diagnostics and treatments will be available, with the hope that more children are diagnosed earlier and have a wider range of treatment options available.
Today, the majority of children diagnosed with Wilms tumour are successfully cured, thanks to decades of research and improvements in treatment. However, for children whose disease relapses or becomes resistant to treatment, the options remain far more limited. Wilms tumour is a rare childhood cancer, meaning research funding is comparatively scarce, and progress depends on continued investment and collaboration.
We believe every child deserves access to better treatments, more targeted therapies and the best possible chance of a cure.
That is why we are incredibly proud to launch The Olivia Rose Fund in partnership with CCLG: The Children & Young People's Cancer Association.
Make a donation to The Olivia Rose Fund
.
Open an online fundraising page for The Olivia Rose Fund
Set up a regular Direct Debit donation The Olivia Rose Fund
Research projects funded
Fundraising pages
Text CCLGOLIVIA to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for The Olivia Rose Fund so that your donation is allocated to the correct fund.