Neuroblastoma Australia is a registered charity focused primarily on raising funds to improve the survival rates of neuroblastoma childhood cancer. It all started due to the inspiration of one little girl, Sienna Hoffmann. Here’s my story of how it all began.

Lucy's story

In 2008, my partner Oliver and I moved to Sydney from London with our 9 month old baby girl Sienna to start a new life in Australia. We were filled with excitement about the prospect of living in a different country and enjoying new experiences. Six weeks after arriving, our hopes started to unravel as our little girl developed recurrent temperatures. The local GP was not too concerned as Sienna appeared healthy apart from the temperatures. However, as the temperature kept coming back, I decided to take Sienna to Sydney Children’s Hospital. It was there that we started on a journey we had never imagined as we were told that Sienna had a large tumour in her abdomen and that she had ‘neuroblastoma’. We had never heard of this disease but were soon to learn that it is one of the most aggressive and under-researched cancers that exists.

Nine months of extensive treatment followed Sienna’s diagnosis. Each stage seemed harder than the next and it seemed to be never-ending, but finally we were told the news that Sienna was in remission. We hoped our journey with neuroblastoma was now over but sadly 11 months later, during a routine scan, a new tumor was discovered and we were told the heart-breaking news that Sienna had relapsed. There is no cure for relapsed neuroblastoma. We clung however to the hope of a miracle and embarked on some new treatments and enrolled in a clinical trial but sadly, the disease became even more aggressive even before the trial started and we tragically lost our little girl when she was just two and a half years old.

Witnessing the treatments that Sienna had to endure and then watching her final days without being able to help has to be the hardest thing any parent has to endure. My frustration that there were no better treatments available due to the lack of research in the area was and to this day, remains huge. The survival rate of neuroblastoma, like many other rare childhood cancers, can be changed with research. Research is all related to funding and since Sienna’s diagnosis, I have been a passionate advocate of raising the profile of the disease and raising funds so better treatments can be developed.

In 2010, I met another Mother, Michaela Flanagan who had a daughter, Ciara diagnosed with neuroblastoma, who is a survivor. Both of us worked on developing fundraising events to raise funds. In 2010 the first Sienna Gala Dinner was held and in 2013 the very first fun run, Run2Cure was held. Michaela organized the first Balmain fund day in 2011. In 2012, Neuroblastoma Australia became a registered charity and received GDR status in 2014.

To date the charity has raised over $2.4 million for research into neuroblastoma

It is my belief we can save children in the future, through investing in research today. It is the responsibility of adults to help children and to ensure they all have a bright, healthy and happy future. Children diagnosed with neuroblastoma are on average just 2 years old. They don’t have a voice and it is so important they have one and don’t have to endure this disease in silence.  We would welcome your support to help us ensure that every child does get the chance to grow up that they so deserve.

Thank you
Lucy Jones

President Neuroblastoma Australia

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