Zane is a lively, bright and fun-loving 10-year-old. He also happens to have Neurofibromatosis (NF1). Zane was diagnosed at 3 months old due to a clinical diagnosis of the hallmark café au lait spots and pseudoarthrosis of his right tibia and fibula.

To say that his diagnosis was shocking would be an understatement. In fact, I barely remember the first year and a half of his life due to being thrown head first into the world of multiple doctors’ appointments, terrifying Google imagery and now having to navigate the perils of not only being a first time Mum, but also a first-time mother to a child with a disability.

Zane has had to endure so much in his 10 tender years on this Earth, from multiple surgeries, MRI’s and missing out on being a “normal kid”. NF has taken so much from us as a family, but Zane has confronted every setback with gusto, grace and true grit. He is always smiling and gives his all, every time. Zane inspires us to be better people and to never give up and never give in, thank you for being such a terrific son.


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