Written by Danielle Rego
Our NF journey started when Max was only 5 years old, but we did not know how much our lives would change for another two years when he was eventually diagnosed with NF2.
It started with a cataract being removed from one of his eyes and a trip to the podiatrist to find out what could be done for a persistent limp that was getting progressively worse. The podiatrist was more than concerned and instructed us to see a neurologist urgently as he believed the issues with his foot was a symptom of something larger.
We were a bit shocked at the time, but even more so when he was put on a 6 month waiting list for an MRI which eventually showed "a thickening of the nerves".
We had never heard of NF and were completely numb listening to the suspected diagnosis. At the time they thought Max had NF1, but did not display all of the usual symptoms. This is when we were referred to the NF clinic at the Royal Children's Hospital (RCH).
Once we were in the RCH system, Max was subjected to a range of different tests with multiple specialists. A month after being referred, it was a geneticist who advised us that he thought Max had NF2. An additional MRI confirmed the diagnosis.
At this point, the main impact for Max was how a large tumour discovered in his thigh was impacting on his ability to walk. Once he got to a stage where he was "unbraceable", he was referred to a specialist in limb reconstruction to try serial casting in an effort to straighten the deformity. It was not successful.
Max's bravery was put to the test earlier this year when he had surgery on his leg and was in an external fixator for about three months to correct a severe drop foot.
He had a lot of metal screwed into his leg and pins in each of his toes to stop them moving. This could be quite confronting to look at, but on top of this we had to do adjustments to the frame every day. He was in pain and in a wheelchair whenever he was outside of the house.
Max had five weeks off school, in addition to school holidays and was very nervous about returning as he was worried about what other kids would think and how he would manage.
He made a video with his teacher after his surgery so the kids could see the fixator before he returned and did a couple of short visits so they would not be so shocked.
We cannot under-estimate the impact that NF has had on his mental health. He is struggling with serious issues; grappling with something a 9 year old would not normally be exposed to or be forced to face. There are so many things he can not do that his peers find effortless; he is old enough to realise that he is different and that constantly being in and out of hospital is not normal.
He knows how rare it is to be diagnosed with NF2 and asks "why did it have to be him"?
It is heartbreaking as a parent to watch this struggle.
We are very lucky that his school has been so supportive, participating in Mates Day this year and even organising a presentation at assembly to talk about "a different sort of bravery". Both of which have had a positive impact on this school-life, reducing the amount of questions and increasing understanding of the condition.
The school also did a "Dress for a Cause Day" in term 2 and NF2 was one of the four conditions nominated. The tagline was “support our mate Max”.
Max was touched by how many kids chose to wear yellow including a large percentage of the teaching staff. We were both a bit teary that day at the support shown. Having a school that is inclusive and takes the time to understand his needs and what they can do to help makes a big difference.
He is now back in an Ankle Foot Orthotic (AFO) day and night and we are now trying to strengthen the leg before a decision is made about whether a tendon transfer is required.
We have also met with oncology about a specific drug to help control the growth of tumours after we have finished with any future surgeries.
Mentally, there have been some incredibly challenging days for Max, but he has done amazingly well overcome these, pick himself up and find the courage to get through the rest of the day with a positive, can-do attitude.