Ava's Pirate Day
2021-04-13
In October 2019, Vanessa and LeeVan noticed that their usually lively four-year-old daughter Ava was feeling unwell. Within days their world was turned upside down when they received a shocking diagnosis; Ava was suffering from a rare and inoperable form of brain cancer, Diffuse Intrinsic Pontine Glioma (DIPG).
DIPG is a highly aggressive cancer which, though uncommon in adults, is the leading cause of death from brain tumours in children. Devastatingly, DIPG currently has a zero per cent survival rate and has a prognosis of just nine to twelve months survival from the point of diagnosis.
Ava underwent radiotherapy in an attempt to reduce the tumour’s effects as much as possible and to give her more time with her Mum, Dad and three-year-old sister Amelie.
But within twelve months of diagnosis, Ava was snatched away in October 2020. Just two weeks before her death her family hosted their very own Pirate Day, a day of dressing up to raise money for vital kids’ cancer research. The family received support from the wider community, with personnel from the Wagga Wagga RAAF base, a local Early Learning Centre and many others joining their Pirate Day crew.
In a moving Facebook tribute, not 12 months after Ava's tragic passing, her mum Vanessa, opened up to reveal what Pirate Day means to her and her family. The Kids' Cancer Project have republished that post here with Vanessa's permission.
Brain cancer kills more children in Australia than any other disease. Our family knows only too well the horrors of childhood brain cancer. Our family knows the unimaginable pain of being told there is nothing that can be done to help your baby. And our family knows the torture of watching helplessly as your baby is taken piece by piece by this horrible disease.
Ava died two weeks after this photo was taken, one year after diagnosis.
We want to live in a world where no other family has to know this. Only science will find solutions and science needs funding.
Pirate Day is a national day of swashbuckling for the serious cause of scientific research to find kinder, more effective cures for childhood brain cancer.
This year Pirate Day is on Friday 14 May. All funds raised will go to Dr Raelene Endersby’s research into immunotherapy for children with brain cancer that has the potential to lead to new clinical trials in the near future.
Last year, thanks to our amazing family and friends we raised over $16,000 with Ava’s Pirate Day Challenge.
You can help give children in Ava's position better access to kinder, more effective treatments. Get your crew together to host your own Pirate Day to raise funds for vital medical research.
Funds raised through Pirate Day 2024 will be directed to Dr Kenny Ip, a neuroscience researcher based at the Children’s Cancer Institute in Sydney. Read more about his work here.