"Henry underwent urgent tests and scans in hospital just before Christmas and we received the heart-wrenching news that Henry had been diagnosed with neuroblastoma. 

I was beyond devastated as I knew all too well how brutal a neuroblastoma diagnosis could be having gone through surgery and radiotherapy for my own cancer in 2015.  I had enquired at the time if there could be a hereditary genetic link and was told that this was extremely unlikely and the chance of this happening was less than 1% so when we received the diagnosis, it was so hard to accept.Our world was therefore shattered when we discovered Henry would also have to battle this terrible disease. George, Henry's dad

In the midst of the holiday season, Henry started his first round of chemotherapy. A daunting battle lay ahead for Henry and our family, one fraught with the promise of relentless challenges and uncertainty. The treatment path prescribed involved multiple rounds of intensive chemotherapy to reduce the tumour’s size, followed by surgery and further therapies, including radiation and immunotherapy.  

The journey was gruelling, and the first round of intensive chemotherapy proved to be an uphill struggle for Henry.  On his third round of chemo the complications increased. Henry developed fluid in his lungs and a low blood count which made breathing and mobility unbearably difficult.

 

Despite the small gains in Henry's health, scheduled testing revealed the presence of more cancer within his fragile body. Scans unveiled secondary neuroblastoma growths in his right leg, both lungs, left lymph node, and spine – metastases that had emerged since the initial December diagnosis. This devastating development catapulted Henry into the high-risk category of neuroblastoma, requiring an even more intense treatment regime. 

Tragically, on the 26th of March 2023, our brave little hero, Henry, could no longer withstand the relentless onslaught of neuroblastoma."

Help Find a Cure 

Join Henry's parents and Neuroblastoma Australia in our mission to make sure every child diagnosed with neuroblastoma can look forward to a future, a future where they get the chance to grow up and lead a long and healthy life.

Henry's parents, like other families affected by neuroblastoma, are desperate for more research to be done so this doesn’t happen to other families. More research is needed to get a better understanding as to why this disease occurs, to identify all the genes involved and to then to develop more effective and safer treatments.

 Although George was originally told there was unlikely to be a genetic link, subsequent research identified a common gene between George and his son Henry. More research is urgently needed to understand these genetics so children like Henry can be cured.

Every child deserves the chance to grow up.