Our NF Heroes

We are inspired by the stories of all our NF Heroes – adults and children. NF affects all genders and ethnicities, and behind every person diagnosed is a different story filled with hopes, fears and challenges. No two cases of NF are the same.

Meet our Captains of the Colour Run

Meet LEWIS, Melbourne

Lewis was diagnosed with neurofibromatosis type 1 (NF1) at just 4 weeks leading to a diagnosis that brought shock and uncertainty about their son's future.

Over time, Lewis developed multiple symptoms, an enlarged head, tumour behind his left eye, and multiple NF tumours on his back, the base of his skull and left temple. The last of which is now causing significant concern. The tumour in not growing under the skin, it’s actually growing into the skin around his eye socket increasing the risk of disfigurement and vision loss.

Lewis is proud to be Captaining the Colour Run in Melbourne this year and is thankful to the Children;s Tumour Foundation "for being a wonderful support and helping my family with my NF".

Meet ARCHIE, BRISBANE

At three months old, Archie faced multiple health challenges, including surgeries for a kidney condition and hearing issues. By age three, he was diagnosed with neurofibromatosis type 1 (NF1), which caused developmental delays.

The diagnosis led his family to move from remote Queensland to Brisbane to access better services and support, a transition that was both financially and emotionally exhausting.

Despite these efforts, the uncertainty of NF continues to impact Archie’s ability to thrive and the well-being of his entire family.

“The constant uncertainty of NF looms over the whole family, and Archie’s condition often pulls him back from being the energetic child he wants to be”, says mum, Kate.

Archie, now 5 is excited to be part of the event, having already run the gauntlet of colour once in 2023 and now sharing his story to help others understand the challenges of living with NF.

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