Jeremy’s independence soars thanks to fly-in therapy services
Outgoing and energetic 20-year-old Jeremy White lives and works in the regional Wheatbelt town of Merredin. Jeremy has always been an incredibly self-motivated young man, so when he decided that he wanted to achieve more independence in his daily life he pushed himself to try new things and build his skills. But getting to this point of independence has been a long and, at times, incredibly challenging journey.
Jeremy lives with Neurofibromatosis Type 1 (NF1) which is a condition characterised by the growth of tumours along the nerves in the skin, brain, and other parts of the body. Often these tumours are benign (noncancerous), however, some people with the condition can also develop malignant (cancerous) tumours.
“NF1 affects approximately 1 in 3000 people. I have 6 siblings and out of the 7, 5 of us have NF. Personally, I first started experiencing symptoms at four years old,” Jeremy said.
At age six Jeremy’s right leg started swelling and started to lose sensation, likely caused by an unfound tumour. By age 11 Jeremy started to experience excruciating ankle pain, which prompted him to see his GP for an x-ray. He was immediately sent to Perth where he was told he had a severely broken ankle and that tumours were present throughout his entire leg. His only option to relieve the extreme pain was amputation.
On the day of amputation, full of nerves and uncertainty, Jeremy said goodbye to his right leg. Afterwards, he was told it had weighed a whopping 17kgs. Jeremy then started his long rehabilitation journey.
“When I stood up for the first time after surgery, I felt like I was on a cloud. The weight from my leg was gone and it felt like I was going to fall over because I was so used to carrying all that extra weight,” Jeremy shared.
“Because they had to remove my leg up to the hip joint, I had to get a prosthetic that had three joints in it. It was secured to me with straps that went around the lower part of my back and I would use my pelvis to guide the prosthetic. It took 6 weeks of intense rehab to get back to walking again.”
Jeremy’s story doesn’t end here. Shortly after receiving his prosthetic, surgeons determined that it was time for Jeremy to have spinal fusion surgery for his scoliosis which he also started experiencing at age 4. They had to wait until after the amputation to be able to do this.
“It wasn’t expected, but because of the spinal surgery, I could no longer use my prosthesis. My hips didn’t move like they used to, so I couldn’t make my prosthesis work. It was hard to come to terms with, as I lost a lot of independence. It was an incredibly dark time in my life”.
As Jeremy got older and his health and support needs changed, he started looking at options to move from his remote farmhouse to the Wheatbelt town of Merredin, where he could access services more readily. He also secured a stable job in the local grocery store, which also motivated the move.
Once settled in Merredin, Jeremy was referred to Therapy Focus’ Flight Squad service, which sees a team of therapists fly into Merredin on a fortnightly basis to deliver NDIS and private therapy services to residents. Jeremy began working with Flight Squad Occupational Therapist Madeleine Skerman to achieve his goals, which included making his daily commute to work easier.
“Jeremy was manually wheeling himself using a wheelchair for over 1km in all weather conditions to make it to his workplace and complete errands around town when we started working together. We looked into getting him a Driver’s Licence, but unfortunately, it didn’t work out as we’d hoped, so we looked into alternative modes of transport,” Madeleine said.
Madeleine completed a postural assessment and began investigating the use of a scooter for Jeremy’s journey to work.
“There were a few things to consider for a scooter, such as installing threshold ramps in Jeremy’s home so he could get the scooter inside to charge it, a sunshade so he wouldn’t get burnt in summer and drenched in winter, and strong tyres for uneven and rocky terrain,” Madeleine said.
Following a trial of Jeremy’s preferred scooter, the supplier met Madeleine and Jeremy in Merredin and was kind enough to let Jeremy trial the scooter in his workplace, so he could ensure it was the right one for him.
After a few months, Jeremy’s scooter was finally ready for delivery. Madeleine attended the handover to make sure everything was set to Jeremy’s liking.
“Madeleine was very thorough throughout the process. She checked my home and measured for an access ramp. Once the ramp was made, she went above and beyond by collecting it and bringing it up with her on the plane so I could try it with my scooter,” Jeremy said.
Despite experiencing such significant medical challenges, Jeremy has a great outlook on life and is thriving and living independently. And with easier access to his workplace and the wider Merredin town, his connection to the community is that much stronger.
“If someone were to ask me if I wanted to go back and stop what happened to me, I wouldn’t. If I went back, I wouldn’t be the same person I am today. I don’t think I would have the same level of empathy I now have.” Jeremy said.
Do you live in a remote area of WA?
Our Flight Squad service travels to the Wheatbelt and Great Southern regions to deliver comprehensive therapy services.