Raphael's Story

Although Raphael was a bright and active baby, persistent breathing issues worried his mum, Kristen. Despite investigation, nothing untoward could be found. Raphael was nearly two years old when another serious breathing episode occurred which led to a shock diagnosis of stage 2 neuroblastoma. Kristen shares their story.  

Raphael was a happy and healthy baby who loved music, dancing, and Cocomelon in his early months.

However, when he contracted viruses, he would often suffer breathing distress. Signs emerged at just eight weeks old, which worried Kristen. 

One morning at 5:30 am, I got him up to breastfeed, and I noticed he was grunting, which didn't feel normal. Kristen, Raphael's mum

Emergency services were called, and Raphael’s breathing was stabilised. The breathing difficulties were attributed to rhinovirus, with doctors suggesting he might develop asthma. Each subsequent rhinovirus infection brought similar episodes of breathing distress. 

Raphael continued to grow and thrive despite these recurring scares. Then, in September 2023, at 1 year and 9 months old, another breathing episode occurred.  

After his shower, my husband was dressing him, and he looked like he couldn't breathe. Kristen, Raphael's mum

At the hospital, doctors suspected pneumonia. Kristen kept pushing for an x-ray of his throat and chest, as she thought he might have a fish bone stuck. The scan revealed a mass on his lung. The diagnosis: stage 2 neuroblastoma.

When he would get rhinovirus, Kirsten believed the weight of the tumour on his lungs exacerbated the breathing issues. 

Further testing revealed that the tumour contained a mutated ALK gene. Genetic testing later confirmed this mutation was confined to the tumour and not present in Raphael or his family. 

The extensive tumour that was wrapped around his oesophagus, main heart artery, and sympathetic nerve, required delicate surgery. 

While surgeons managed to remove 50% of the tumour, some remains. Importantly, Raphael requires no further treatment beyond the surgery. 

Now three, Raphael is under close observation with regular MIBG scans.

While the cancer may be regressing, the surgery has caused some minor lasting effects. Due to nerve tamper, he doesn’t blush or sweat on the left side of his body.  

Despite these challenges, Raphael's laughter still fills the room as he plays with his siblings. He loves Power Rangers, Spider-Man, and Ninja Turtles, and his eyes light up when he sings along to Benson Boone’s 'Beautiful Things', Kiss’ 'I Was Made for Loving You', and the Moana soundtrack. 

And, of course, he's a huge Parramatta Eels fan, declaring he'll play for them when he's big! Kristen, Raphael's mum

Help Toddlers Like Raphael

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma.

We need to ensure every child gets the opportunity to grow up and lead a long and healthy life. Your help matters. Your donation to Neuroblastoma Australia ensures that we can continue to help fund the research needed to develop better and safer treatments, and ultimately find a cure.

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