Little Superheroes Unite to Beat a Childhood Cancer
On Sunday 4 June 2017 the fourth Run2Cure Neuroblastoma will take place in the stunning setting of Sydney’s Domain and Mrs Macquarie’s Chair. Organised by registered charity Neuroblastoma Australia, the event endeavours to raise awareness and desperately needed funds for research into neuroblastoma, the leading cause of deaths from cancer in children under five years of age.
Image courtesy of Neuroblastoma Australia
Neuroblastoma is a solid tumour arising from particular nerve cells in the abdomen, chest and into the skull. The most common area for the tumour to grow is in the abdomen. It usually occurs in children between the ages of 0–5 years, and diagnosis is often delayed as the early symptoms can be subtle and indicative of numerous non-serious childhood illness. By the time a diagnosis is made the disease has often taken hold. Currently, children with an aggressive form of neuroblastoma have only a 50 per cent chance of beating the disease. You can read more about neuroblastoma here.
To date, the Run2Cure Neuroblastoma event has raised more than $430 000 for research into this cruel disease. In 2017 it is anticipated the event will raise a further $150 000 to continue to support neuroblastoma research projects. Further research will lead to better treatments, allowing more children to survive this disease and experience fewer long-term side effects of treatment.
Run2Cure Neuroblastoma is a vibrant morning offering something for everyone, no matter your age or ability. There are three fun runs – timed 3 km, 5 km and 10 km runs – and a 1 km walk for children five and under with their families. The 3km, 5 km and 10km fun runs begin in the Doman and loop around Mrs Macquarie’s Chair. The 1 km fun walk, called the Little Heroes 1 km, is within the Domain, and children are invited to dress as their favourite superhero and walk together with their parents, siblings and extended family. The event also features live entertainment, including Play School’s Abi Tucker, a kindy farm, pony rides, jumping castles and face painting.
‘It’s an exciting, meaningful occasion,’ says Neuroblastoma Co-founder and Chief Executive Lucy Jones. ‘There’ll be a strong representation of neuroblastoma families from all over Australia. Some of those are currently fighting the disease; some are participating in memory of a loved one.’
Tragically, in 2010 Lucy lost her precious daughter Sienna, at just two and a half years of age. In 2010 Lucy founded Neuroblastoma Australia together with other parents driven to raise the profile of neuroblastoma and help fund a cure. ‘Sienna’s experience compelled me to do something about this terrible disease. Better funded research does change survival rates. Our charity’s vision is to ensure all children have the chance to grow up and lead long and healthy lives, without side effects from their treatments. I have total belief that there are other people who care and want to improve the outcomes for those children affected by neuroblastoma.’
‘We’re asking mums to jump on board to support Run2Cure Neuroblastoma. Why not form a team for a chance at one of the fundraising prizes or register the whole family for a fun, healthy outing? There are even opportunities for sponsorship or to become a volunteer.’
You can find out more about Run2Cure Neuroblastoma and register for the event here.
Image courtesy of Neuroblastoma Australia
Isla’s story
To learn more about the impact of neuroblastoma, I spoke to an Inner West family that battled this devastating cancer – and won. At just six months of age, Angelee and Justin’s daughter Isla was diagnosed with stage 4 neuroblastoma. Isla has recently turned ten years old.
What led to Isla’s diagnosis? I ask Angelee. She explains: ‘For three months we’d seen various doctors about black eyes that would come and go. Finally, on 19 September 2007, we were delivered the news that she had neuroblastoma.’
I ask Angelee about how it felt to receive this diagnosis. ‘There are no words to describe the disbelief and total despair of such news. It is as if you and your family have been pushed into a black hole. No choice, no decision making. All our dreams and expectations were instantly stolen from us. We were numb.’
Image courtesy of Angelee
What was the treatment period like? ‘It was long and hard,’ Angelee says. ‘We spent three years in and out of hospital. In the first year we calculated that Isla had spent at least 300 days out of 365 in hospital. We lived with the constant dread of every test result.
‘We thought for a while that Isla was free of neuroblastoma but at three and a half years a check-up scan showed that the disease had come back. It’s possible, however, that the scan was not sensitive enough to pick it up in the first place. (Neuroblastoma is good a playing hide-and-seek.)’
With very good fortune, Isla’s disease did go away eventually. ‘On 4 May 2016, Isla reached her five-year remission, almost nine years after her diagnosis,’ says Angelee. ‘It was an agonisingly long time to wait, but so worth it. We are among the lucky ones. We got to take our baby home.’
Although Isla is neuroblastoma-free, the lasting impact of her neuroblastoma battle is unknown. ‘Now we are in long-term clinic where they test for side effects of all the drugs we had to give to keep our baby alive. There can be heart, fertility, dental and anxiety issues.’
I ask Angelee whether the family is involved in the neuroblastoma community. ‘Yes,’ she says. ‘We help all childhood cancer charities as much as we can and as often as we can. And we have supported Run2Cure Neuroblastoma since the beginning – that won’t change.’
Image courtesy of Angelee
Cover image courtesy of Neuroblastoma Australia
https://www.neuroblastoma.org.au/
https://run2cure.org.au/
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