The Grace Kelly Ladybird Fund at CCLG is raising funds for research into malignant rhabdoid tumours. Currently there are no UK charities dedicated to these rare cancers of childhood.
Grace was born on 9th July 2010. Until September 2014 she was a completely healthy little girl. She was petite but becoming increasingly athletic. She started school in September 2014, and was so proud. She had a couple of what seemed to be viral infections, and high temperatures, similar to the other children. The only other sign was that Grace did seem to be a bit tired, but then she had just started school and was one of the youngest in her year.
On 19th October, Grace was admitted to hospital after waking in the night with sudden onset abdominal pain, initially thought to be appendicitis. This began a roller coaster journey.
A week later, a CT scan found Grace to have a renal tumour, initially thought to be a Wilms tumour with lung metastases. She subsequently went on to have this biopsied, and following this deteriorated rapidly. She suffered greatly. On 7th November, the histology came back as a malignant rhabdoid tumour. She was deemed palliative and passed away her mum's arms on 8th November 2014 aged 4 1/4, in Birmingham Childrens hospital. She left behind a little sister, Jessica, who was only 10 months when she died.
Grace went from a happy little school girl to passing away in less than 3 weeks. Malignant rhabdoid tumours are one of the most aggressive and lethal childhood tumours known. They are rare, forming only about 1% of all childhood renal tumours, but are deadly. They are highly aggressive and metastasise early, with 80% patients presenting with metastatic disease, usually with very few symptoms.
Survival is poor, with an 18-month survival rate of only 20%, and almost all patients succumbing before 5 years post diagnosis. Of the 80% of children that present with metastatic disease, only 8.4% will survive 2 years. There is no standardised treatment protocol.
Grace's Ladybird Fund has been started by her family. Grace's mum Jenny said "Grace is the reason we want to try to raise money towards research and treatment of these tumours. Even if we can only help one family it will be worth it."
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