Most young boys spend their childhood dreaming of becoming successful sport stars – the next best thing in football, soccer, or athletics to come out of their hometown. This is no different for avid sports fan, Jesse, but a bone deformity in his leg brought on by complications in his NF diagnosis meant he had a few battles to overcome first.
Jesse was diagnosed with NF1 at 18 months after a routine check-up and vaccination shot when mum, Belinda, questioned Jesse’s bowed leg. Immediately sent for an x-ray, scans revealed this was more than a bowed or broken leg.
“We were sent to the Port Macquarie Base Hospital and warned that DOCs would possibly be there to ask questions,” recalls Belinda. “Once at the hospital the doctors could see the x-ray, which was very cloudy and not just an obvious break. We were told that Jesse had bone cancer and we would fly to Westmead the following day for a biopsy. I spent all night awake in hospital. This was one of the hardest nights of my life.”
After reviewing the scans, doctors in Sydney confirmed that Jesse did not in fact have cancer, but had NF, and had developed pseusoarthrosis in his left leg as a complication of the condition.
“When he was diagnosed I was relieved that it was NF and not bone cancer. Jesse’s main issue was the deformity of his leg. We would just get a new ankle-foot orthotic (AFO) every six months or so. Otherwise he was so like all the other kids,” says Belinda.
Pseudoarthrosis causes difficulty in the body with repairing fractured or broken bones. For Jesse, this meant that his leg was susceptible to breakage and, according to doctors, was not a matter of if but when it would break.
By five years old Jesse had undergone dozens of check-ups at The Children’s Hospital at Westmead, bone density scans, CT scans, MRIs and X-rays. He also underwent surgery to remove a large tumour growing aggressively on his ankle that had caused his ankle to double in size. It was then that Jesse’s surgeon advised there would be a need to amputate.
“We were surprised and in shock,” says Belinda. “I thought, surely you don’t just amputate children’s legs these days, and wondered if there was something else we could do. I had heard that most kids with pseudoarthrosis would generally lose their leg, but I didn’t think that it would be us.”
Belinda struggled to explain the situation to Jesse, but if his reaction to getting a “new strong robot leg” was anything to go by, fear was the last thing on Jesse’s mind.
“He was really excited, and that’s when we all knew that this was going to be the best thing for him,” says Belinda.
“The hardest thing I’ve ever done is take Jesse into the pre-op surgery room and kiss his leg goodbye as I knew I would never see it again,” recalls Belinda. “I knew it was for the best, but it was a very sad moment I will never forget.”
With a visit from Australian Parramatta Eels football player, Nathan “Hindy” Hindmarsh two days after his surgery, Jesse was quick to get on the mend, and his fearlessness continued straight through recovery.
“He didn’t cry a single day after his surgery. He had an epidural in for five days and never complained of any pain,” says Belinda.
Now fitted with a prosthetic leg, Jesse is back on the field tackling all types of contact sport. In 2013 he joined other children in his local community to play under 8’s rugby league, and even laughed when his prosthesis fell off during one of his races at a school sports day, but not even that stopped him from reaching the finish line.
“I no longer cringe when he is running around being a little boy,” says Belinda. “He’s a different kid. He is a much happier kid.”
At only eight years old, Jesse has undergone life-changing procedures, but it’s hard to believe that this is only one of the many battles Jesse will face as someone with NF.
“The hardest thing I’ve ever done is take Jesse into the pre-op surgery room and kiss his leg goodbye as I knew I would never see it again.”
Jesse also has tumours on his spine and his left optic nerve, which are both being monitored by doctors at The Children’s Hospital at Westmead.
Children diagnosed with NF also typically suffer from learning difficulties, but Belinda has been quick to address this from the start.
“I was aware that NF kids could have learning difficulties, so I purchased online learning programs (reading eggs), I held him back a year, and we were involved in an Early Intervention pre-school program,” says Belinda.
Now in Year 2, Jesse is among the smartest in his class, topping reading groups and mathematics.
“He does not show any signs of learning difficulties,” says Belinda. “It’s funny, because when I told his teachers that learning difficulties was one of the major issue with NF, they were very surprised. I hope that nothing comes of the tumours, as the tumour in his eye is in a difficult spot. I hope that he stays smart and can have a good job. I hope he stays happy.”
Jesse is loving his new leg and is dreaming of one day running in the Paralympics.