Grayson Pearsall was taken to a hospital due to an allergic reaction to eggs – but when the doctor took a look at him, he was far more worried about the spots appearing on his back.
One year old at the time, Grayson’s mother said that the “birthmarks” were “popping up everywhere”, with 12 of them on mostly his back and torso.
After noticing Grayson had a larger head circumference than normal and had not been meeting several milestones as a baby, doctors decided to perform an MRI on his brain – where they discovered the growth of multiple tumours.
Grayson has Neurofibromatosis Type 1 (NF1), a hereditary disorder that affects around one in every 2500 births.
The Children’s Tumour Foundation Australia (CTFA) said on Facebook that despite being “one of the most prevalent neurological genetic conditions … awareness of the signs and symptoms remains low, even amongst healthcare professionals”.
While it’s common to have a birthmark or two, those with NF1 will often find themselves with six or more, explaining why Grayson has so many.
Around 15 per cent of those with NF1 develop these tumours (gliomas), making the odds of this happening very low.
These tumours are largely benign, though bear the potential to turn cancerous.
Grayson has multiple tumours in his brain and behind his eye, which is called an optic pathway glioma. He also has a tumour growing on his spine.
His mother, Jennifer Pearsall, told 7News that his condition has to be “constantly” managed and monitored.
“It’s just about trying to keep him as normal as possible in life because we don’t want to worry him,” she said.
“It doesn’t mean I’m not worried. I constantly worry.”
Grayson’s tumours are all benign, and he is now six years old.
Many children with NF1 end up with no medical problems from the disorder.
That said, Ms Pearsall said that things can still feel like “a constant ticking time bomb”.
“You don’t know what the next scan’s going to look like,” she said.
The CTFA is supporting the Pearsall family, and is holding a colour run event on Sunday in Brisbane to raise funds and spread awareness on NF.
An event also took place in Sydney on November 12, with another scheduled in Melbourne on November 26.
Originally published as Queensland boy’s birthmark-like spots actually revealed life-threatening tumours