When Ipswich boy Grayson Pearsall was taken to an emergency department for an allergic reaction as a baby, a doctor spotted something of greater cause for concern.
“The paediatrician at the hospital was more concerned about his Café-au-Lait marks than his actual egg allergy,” Grayson’s mum Jennifer Pearsall told 7NEWS.com.au.
The one-year-old had about 12 of the light brown spots, resembling birthmarks, mainly on his back and torso.
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The marks had been “popping up everywhere” after he turned six months old, according to his mum.
Combined with the fact he “wasn’t meeting his milestones” as a baby, and had a larger head circumference than most children his age, a decision was made to have an MRI scan of his brain.
“They identified that there were benign tumours growing in his brain. Also his optic nerve gliomas were starting to thicken in the eye,” Pearsall said.
Grayson was diagnosed with Neurofibromatosis type-1 (NF1), a genetic condition causing tumours to grow along nerves.
About one in 2500 babies are born with NF1.
When he was two, Grayson developed lumps on his back.
An MRI was performed and doctors found “a benign tumour growing on his spine”, Pearsall said.
Grayson is now six years old and the tumours on his brain and back remain benign, despite the latter growing to about 13cm in length.
His condition has to be “constantly” managed and monitored, Pearsall says.
“That’s done with MRIs, with taking him to all these specialists and they’re aware of his progress,” she said.
“He sees his ophthalmologist once a year. He sees his oncologist twice a year and his pediatrician twice a year.”
But Pearsall knows at any time, any of her son’s tumours could become cancerous.
“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.
“It feels like it’s a constant ticking timebomb.
“You don’t know what the next scan’s going to look like.”
The family has been supported by the Children’s Tumour Foundation, which is holding a colour run event in Brisbane on Sunday to raise money and awareness for the fight against NF.
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