Little Isabella Perry knows she’s unique and owns it.
The four-and-a-half-year-old calls her birthmarks and freckles, of which she has more than 50 covering her entire body, her “NF spots”, and wears them with pride as an “NF hero”.
It’s a badge of honour she and her mum, Rachel, came up with when Rachel had to explain to her daughter why other kids were making fun of her.
Bella is the 1 in 2,500 in Australia diagnosed with Neurofibromatosis, or NF for short.
The genetic disorder causes tumours to form on any one of the billions of nerve cells in a child’s body, including the brain and spine.
It is painful, progressive, unpredictable and, sadly, it can be terminal.
There is no cure.
Rachel suspected there was something wrong when Bella was only six weeks old.
Her seemingly innocent birthmarks – termed café au lait spots – were multiplying rapidly.
Rachel learned at a peadiatrician appointment that these spots were a marker for the genetic disorder, with which Bella was formally diagnosed five months later at the neurogenetics clinic at The Children’s Hospital at Westmead.
She was told to return every year thereafter so a team of specialists could monitor Bella, which soon turned into six-monthly check-ups.
Before she was three, doctors found a tumour on Bella’s C4 vertebrae, compressing her spine, and a number of hyperintensities on her brain that could evolve into tumours at any time.
“That’s one of the most frustrating things as an NF parent, is the watching and waiting,” Rachel told Newcastle Weekly.
“It’s like a ticking time bomb.”
Nowadays, doctors continue to monitor Bella’s tumour (which, in cases of NF, prove to be resistant to traditional cancer treatment), and hope they don’t have to operate before she becomes a teenager.
Rachel said the tumour could safely grow another centimetre before that became a reality.
“Surgery still carries the risk of paralysis and death, but if we do nothing, we’ve got the same risk,” she said.
Amidst all this, Rachel quit her job to work with the Children’s Tumour Foundation of Australia, an organisation dedicated to funding research for an NF cure.
Part of her role is to campaign manage the Cupid’s Undie Run fundraiser, a Valentine’s Day weekend fun run held all over Australia – including Newcastle – to benefit the foundation to help people just like Bella.
Nobbys Surf Life Saving Club will again proudly host the Newcastle event along the Nobbys Beach promenade this Sunday 17 February, from 12pm.
Runners can dress up or down, and a pair of Calvin Klein underwear as well as an ‘I’m With Cupid’ T-shirt are included in the registration fee of $70.
Go to cupidsundierun.com.au to register or donate up to a month after the event.
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