Jesse was diagnosed at 18 months when mum, Belinda questioned his bowed leg during a routine check-up and vaccination.
Scans revealed this was more than a bowed or broken leg - with fears it could have been bone cancer. When it was revealed to be NF and not cancer, she was initially relieved, believing the worst this deformity of his leg would require would be a new ankle-foot orthotic every six months.
Unfortunately, he had also developed pseusoarthrosis in his left leg - a complication of his condition. Pseudoarthrosis causes difficulty in the body with repairing fractured or broken bones. For Jesse this meant that his leg was susceptible to breaking and according to doctors, was not a matter of if, but when.
He also had a plexiform neurofibroma on his ankle that was slowly growing. By 5 years of age, Jesse had undergone dozens of check-ups, bone density scans, CT scans, MRIs and X-Rays, as well as surgery to remove an aggressive tumour from his ankle that had caused it to double in size.
It was then that Jesse's surgeon advised there would be a need to amputate.
Belinda struggled to explain the situation to Jesse for fear of how he would react, but she need not have worried. His reaction to getting a "strong, new robot leg" was one of excitement, not fear. He would be able to play footy. After years of battling pain and having difficulties walking, Jesse's lower leg was amputated in April 2012.
The hardest thing I've ever done is take Jesse into the pre-op surgery room and kiss his leg goodbye, knowing it would be the last time I would ever see it again. I knew it was for the best, but it is a sad moment I will never forget."
Since his amputation he has conquered so much!
A visit from his footy idol, Nathan Hindmarsh from the Parramatta Eels two days after his surgery was enough to get him on the mend with a fearlessness that has never wavered.
He has made it to state level for the 100m and 200m sprints and discus. He played rugby league for a year following his surgery and continues to play basketball and touch football. He manages his local NRL club's age group and enjoys being ball boy for his local senior club.
He was School Captain in Year 6 (2018) and now in Year 7 at High School, he is both popular amongst his peers and enjoys school and sport. He also enjoys the position of Referee at his local club. A way to stay connected to the game he loves so much.
Jesse also has tumours on his spine and his left optic nerve, which are both being monitored by doctors at The Children's Hospital Westmead. He has every reason to say I can't do that, but instead his response has been, I can and I will.
His optimism, ability to marry passion with purpose, while also reconciling with the loss of a limb at such a young age is nothing short of extraordinary.
It is for these reasons and hundreds more why we believe Jesse is an NF HERO.