Hi my name is Zoe and this page is for my friends the Spence family. My hope is that we can raise some funds towards potential treatment for Rosie if not successful through the NHS, family trips out, or anything that Rosie and her family may need in the coming months. The Spence family also want Rosie’s story to spread awareness of this very rare condition.
Rosie is 2 years old, full of life and love. She lives with her Dad, Mum, big sister Fern and dog Jake.
On 16th May Rosie was having absent seizures, her lips were turning blue they lasted 20secs or so, and it was put down to feeling unwell/sick, She had another 4 episodes so her parents took her to a&e, they kept her in over night and she had a further 6 episodes, she was kept in for 2 nights on the EEG to catch a seizure... but nothing happened on them, she was sent for an MRI on 19th May and it came back she had a huge tumour in her brain.
On 2nd June Rosie went for brain surgery to get a biopsy and removal of tumour if safe enough to do so, amazingly they removed it completely and Rosie has recovered very well.
On 10th June the Spence’s had the news that no parents ever want to hear - Rosie was diagnosed with ATRT (Atypical Teratoid/Rhabdoid Tumour) , a rare and aggressive grade 4 cancer.
Although Rosie’s tumour was fully removed there is still cancerous cells there, and so she has started chemotherapy, will need to have radiotherapy and is waiting to hear if she is a candidate for proton beam therapy.
The 5-year survival rate for ATRTs is 32.2%. It is a fast growing brain cancer. ATRT is most often diagnosed in infants 1-2 years old, they represent approximately 1-2% of all paediatric brain tumours. There is approximately 58 people diagnosed with ATRT globally each year.
Please help us spread awareness of this horrible condition, and also raise as much as we can to support the Spence’s throughout this heartbreaking time.
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- Gillian Drummond
- Nicola Tatters
- Meghan Stenhouse
- Maureen McPherson
- Paul Boyes
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