Our beautiful daughter Fleur passed away in August 2022 because of her illness, an aggressive type of brain cancer. About 3 years and 8 months before, she collapsed on the oval at school, vomited, could not stand up, could not speak and having her eyes moving in all directions. Miranda picked her up from school and brought her home, not having a clue what was going on. Mike rushed home and we deci
ded to bring Fleur to hospital. Shortly after, we were told the horrible truth, Fleur had a huge tumour in her head, causing multiple strokes, heart arrests and severe brain damage. She was stabilised and brought to Perth Children’s Hospital, followed by several emergency brain surgeries performed by Dr Sharon Lee and her team, saving her life. Waking up from this trauma, Fleur was completely paralysed on her right side, she could not speak, eat, drink, use her arm or leg. She barely survived and was severely disabled, but as Fleur was not ready to part ways with us, she regained most her mobility in a matter of weeks, through rehabilitation and her strong will to get back on track. After assessment by various tumour research institutes, Dr Nick Gottardo consulted paediatric brain cancer specialists at Telethon Kids Institute to find a plausible solution extending Fleur's life in good quality. Fleur received a precision drug controlling the tumour growth, and this turned out to be a temporary lifesaver, as Fleur’s tumours shrank, enabling to get back to “normal life”. Surgeries to restore her skull and the wounds eventually resulted in some serious inflammations and infections. Fleur had to be taken off the cancer drugs to give her body time to recover, with the consequence we could not use these magic pills anymore. Through his contacts in the medical world, Dr Nick found another precision drug with similar capabilities, stemming the tumour growth and helping Fleur recovering from the inflammations. Miracle number three. Unfortunately those pills also stopped working, and without any other suitable solutions available. We had no other choice than to see our daughter slip through our fingers bit by bit, losing capabilities, mobility, speech, sight. She passed away peacefully, surrounded by her family and friends. Fleur fought a tough battle, but always kept spirits high, she laughed out loud many of times, and was always telling us about her dreams for the future. If we were sad, she lifted us up by a giggle and a tickle, lightening us up when we needed to. She was a wonderful princess, a true fighter, an example for everyone. In her spirit we’ve decided to continue supporting parents and children in similar situations. We will continue raising funds through a fundraiser we've set up with Telethon Kids Institute (see web link) and by sharing our experiences and know-how with other parents. We are also volunteering with other kids cancer groups, raising funds for many beneficiaries close to our heart, and we kindly ask you supporting us. Thanking you so much for all the support given to us over the years, and appreciate your help finding new pathways to eradicate paediatric brain cancer, once and for all.
