Felix's Story
Meet Team Felix
Felix was just 19 months old when he was diagnosed with NF1.
His parents first noticed café au lait spots appearing when he was around eight months old. Within weeks, more had appeared. He was also slower to hit some early movement milestones. Trusting her instincts, Felix’s mum, Nicky, began researching possible causes and came across neurofibromatosis.
With the support of a responsive GP, Felix was referred to the neurology team at Monash Children’s Hospital. Over the following months he underwent a series of examinations and tests. After ten months of investigations, genetic testing confirmed he had NF1.
There is no family history. Both of Felix’s parents tested negative. His older sister shows no signs. Felix is the only one in the family with NF.
The fear of the unknown was overwhelming at first. There were a lot of tears. A lot of ‘why him?’ and ‘could we have done something differently?
Originally from the UK, with family overseas, the news felt isolating. But something unexpected happened when they signed up to Step Up for NF and began fundraising — the support poured in.
“It made us realise how many people are behind us. Friends, family, colleagues — people who hadn’t even heard of NF before — all showing up for Felix.”
Four months on from diagnosis, their focus has shifted.
Felix is still the same cheeky, funny, loving little boy. He wrestles with his big sister, climbs anything he can, and keeps the family dog on high alert. His diagnosis hasn’t changed who he is — and it won’t define what he can become.
Finding Support When It Matters Most
Like many families, they had never heard of NF — and Felix’s mum is a nurse.
“We were in the dark and stuck in a Google spiral.”
Connecting with the Children’s Tumour Foundation changed that.
“The voice on the end of the phone offered reassurance and hope during a really scary time. We were given clear information and practical resources. It helped us explain what was happening to friends and family when we didn’t have the words.”
Knowing there is a dedicated organisation outside the hospital system gives them comfort.
No matter what the future holds, we know there is somewhere else we can turn — for support, guidance and community. Somewhere Felix will always be accepted, judgement free and safe.
Why They’re Stepping Up
For Nicky and Team Felix, taking part in Step Up for NF is about turning fear into action.
“Knowing we may need support again in the future, we want to give back now — for Felix, and for every other family facing the same unknowns.”
Step Up has also brought something positive into an otherwise heavy time.
“It’s been a good distraction. Something fun. Something that brings people together.”
Most of all, it’s given them a sense of purpose.
With NF, it can feel like you have no control. By stepping up and raising funds, we feel like we’re taking some of that control back. We will do anything to give our son the best chance at a long, happy and healthy life.
Team Felix has stepped up for their little boy.
Now they’re asking you to Step Up with them.
Donate to Team Felix today and help ensure no family faces NF alone.
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