Thank you for visiting the fundraising page of our Superhero Charlie Shirran, a gorgeous 1 year old little boy who was devastatingly diagnosed with stage 4 high risk neuroblastoma in March 2016, at just 9 months old.
What is neuroblastoma?
Neuroblastoma is a cancer of specialised nerve cells called neural crest cells. These cells are involved in the development of the nervous system and other tissues. This type of cancer almost always only occurs in children. There are many types of neuroblastoma but they are broadly classified into low, medium or high risk, each with different treatments and prognoses.
Unfortunately, Charlie has the most aggressive high risk form. On diagnosis, the cancer had already spread to his bones, which is how his Mum & Dad discovered it, after noticing a hard lump on his face. It is very rare for a child under 12 months to be diagnosed with such an aggressive form. In fact, Charlie may well be the only baby in Australia to be diagnosed with high-risk neuroblastoma this year.
The duration of standard treatment, which Charlie is currently undergoing, is 12 months long. He has had 4 months of intensive chemotherapy through a central line in his chest, major surgery to remove his primary tumour, a 5 week long stem cell transplant where he was kept in isolation because of the risk of infection and he is now embarking on radiotherapy followed by 5 months of immunotherapy.
The treatment he is receiving will very likely lead to long term chronic health problems eg deafness, infertility, heart failure, learning disorders etc. According to best evidence, this will give him a 50/50 chance of still being alive in 3-5yrs. That’s better than 15yrs ago when this diagnosis would almost certainly have been a death sentence.
Why are we fundraising?
Even after this gruelling treatment regime, relapse rates for high-risk neuroblastoma patients are high. Tragically, standard treatment options for cases of relapse are very limited. Patients are faced with huge, huge costs of seeking treatment in the USA, where many trials are taking place. The plan is now for Charlie to go over to the States as soon as his standard treatment finishes in Australia, where he will receive a vaccine aimed to prevent relapse of this dreadful disease and hold him in remission. Vaccines of this kind are extremely expensive and could cost the family up to half a million US dollars each.
With this in mind, the ‘Chasing Charlie’s Cure’ appeal has been set up, to try and raise funds so that Charlie and his incredible family can be supported through this, their greatest challenge. So, together, we can give Charlie his very best chance of beating this torturous disease. And of course, any money not used directly for Charlie’s treatment will go straight to neuroblastoma research, to help fund the incredible institutions who are striving to rid this world of cancer.
Please dig deep for an amazing cause, to help save our incredible Superhero! Thank you so much for your support.