Harley’s Story

Harley was born a healthy, happy baby with no concerns. At around three months old, we noticed a couple of birthmarks on his skin. We were reassured by health professionals that they were completely normal and, at the time, there was no reason to think otherwise.

At six months old, Harley had his first seizure, which led to a hospital admission. During that stay, doctors noticed more of the birthmarks and one doctor gently asked if we had ever heard of Neurofibromatosis Type 1 (NF1). As a nurse myself, it was something I had never come across before. From that moment, our journey with NF1 began.

Throughout Harley’s early childhood, he attended regular annual appointments. For several years, nothing significant changed apart from more café-au-lait patches appearing on his skin and freckling in his groin and under his arms, both common signs of NF1.

When Harley was six years old, he began waking up and vomiting. We knew something wasn’t right and pushed for further investigation. A brain scan revealed the devastating news that Harley had an inoperable brain tumour.

Ongoing monitoring has since shown that Harley now lives with four inoperable brain tumours, alongside multiple subcutaneous fibromas, plexiform fibromas and countless café-au-lait patches.

Harley also lives with autism, speech and language delay, and sensory processing challenges. In February 2025, he underwent surgery for SVT. Each of these challenges brings daily battles, but Harley faces them with incredible strength and resilience.

Despite everything, Harley is the happiest boy. He is always smiling, always laughing, and has the kindest, most caring nature. He brings joy to everyone who meets him. Harley is obsessed with planes, especially Emirates, and loves the excitement of rollercoasters, The Smiler being his absolute favourite. He continues to make us proud every single day with his courage, determination and his ability to find happiness in the smallest moments.

He is not alone in this mission. Harley’s aunties, his uncle and close family friends have also taken on the incredible challenge of running the London Marathon in his honour. Their dedication and love for Harley have helped spread awareness far and wide.

As a family, we also organise charity nights, which are always incredibly well supported. The generosity, kindness and love shown by everyone who attends never fails to amaze us, and together we have raised fantastic amounts of money to support NF1 research and help other families facing similar journeys.

NF1 is a lifelong condition with no cure. It brings uncertainty and challenges that no child should have to face. But through raising awareness and funding vital research, we hope to be part of changing the future.

Harley continues to face everything with a smile. He is funny, brave and full of life. He inspires us every single day and through sharing his story, we hope to bring awareness, support research and move closer to better treatments, and one day, a cure, for NF1.