Jesse is a big sports fan and dreams of becoming Australia's next big athlete, but complications with his NF have forced him to first overcome some major challenges, including a bone abnormality and amputations of his leg.
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", recalls Belinda.