Written by Edward
My name is Edward Hayek. I am 14 years old, I have three brothers and I am the first in my family to be impacted by NF1.
Mum noticed my first birth mark when I was six months old and by eight months I had ten of them of various sizes scattered all over my body. I reached all the infant milestones expected in the first years of my life, but there were things that mum noticed that did not seem right.
I hated swings and slippery dips, I didn’t like to climb trees and I ran like an old man. My younger brother was always able to beat me at sport and could ride a bike when I couldn’t.
As I reached primary school, I struggled to keep up during sport, so making friends with boys my age was difficult. I couldn’t catch a ball and it always seemed to hit me in the face.
One day when I was about ten, I held Mum’s hand tight as we crossed the road, but my little brother didn’t. I could not tell how fast the car was coming towards me, so I didn’t feel safe.
Primary school was an incredibly lonely experience, particularly from Grade 2 to 5. I didn’t have friends and I was bullied. No one liked me.
I couldn’t play sport at lunchtime, so I wasn’t welcome. I felt like I didn’t seem to fit in anywhere. I guess I was a bit quirky and rumours were spread about me just to be mean. I was the new kid and never really found a group of friends.
I started to believe that this was my life, that I would never have friends. When I thought I did make a ‘friend’ they stabbed me in the back, spread more rumours and talked behind my back in an attempt to be more popular themselves.
The same group of kids continued to bully me all the way through school to Year 6, before (unbelievably) things got even worse. It started with comments about my skinny body structure, suggesting that no one would ever find me attractive and that I would die alone. Worst of all, they taunted me with the notion that I should go kill myself. I rarely spoke to teachers or my parents about how I was feeling as the threats scared me so much.
During those years I began to feel anxious, depressed and developed trust issues. There were times when I hated my life and wondered quite seriously about whether I did want to die. I felt worthless, thought that nobody would ever like me and wondered who would even care if I did die. I could not see that my family loved me. In my mind, I believed that they only said those words because they had to, not because they really meant it."
Sometimes one single act of kindness and a single friend is all it takes to stem the tide of hate.
The first turning point for me was a moment in Year 5 when I spent the day with a friend I had not seen since Kindergarten - just having fun and chatting all day long.
It was just enough to shift my thinking. In that moment I realised that if I could make one friend, I could make more, but more importantly, I knew that someone would care if I died.
I knew I was not worthless.
The other big influence on my life occurred when I attended my first NF camp with the Children’s Tumour Foundation.
I met other people my age who struggled to fit in and were often bullied. We became a strong support network for each other; our friendships growing stronger every year that we reunited at camp. I slowly realised that there are people who actually care so the things the bullies were saying didn’t bother me so much and I discovered that there are people I can relate to.
By the end of Year 5 I had a few friends that I could trust wouldn’t backstab or pretend to be my friend, but the majority of people ignored me or were bullies.
Just before Christmas 2015, I was scheduled to have an MRI to try and determine the cause of the constant headaches I was having. The results were not good. I had a tumour the size of a golf ball in my right cerebellum, but my parents decided to let me enjoy Christmas and not worry me with the results until the neurosurgeon’s appointment in January was confirmed.
Within a few days of that happening, I was scheduled for surgery with Dr Dexter to have it removed. We were lucky. The ‘beastie’ was contained in a capsule and had not penetrated the rest of my brain and I only had a day or two to worry myself over it.
I remember my nurse Eddie was really kind and playful. I remember trying to catch a balloon and feeling weird moving through the corridors with walls spinning past me. My family visited me every day, but the entire Christmas holiday was spent recovering from surgery. The only friend who came to see me was my old friend from Kindy.
I returned to school with a big scar behind my right ear the shape of a question mark and a new outlook on life! I knew I was here for a reason! By surviving brain surgery, I realised that I must have something important to offer the world in the future. This has been my constant thought in the years since."
In my final year of Primary school, I decided to give a presentation in class about my surgery and condition, opening up the discussion about NF and allowed kids the chance to ask about my scar.
Almost immediately following the surgery, I found my sense of coordination and no longer ran like an old man. I celebrated by joining the basketball team and started to learn piano just 8-weeks post operation.
The tumour had been holding me back without us even realising it.
I relished being able to run the length of the court dribbling the ball and could see the tears in Mum’s eyes as she cheered from the sidelines. I'm not the best player on the team, but I try hard and improving every time I play. The coach is understanding of my condition and limitations, but the guys make no concessions for me, which is perfect. So, this was my rehabilitation instead of physiotherapy and occupational therapy.
Heading into High School, I made some good friends and the bullying has started to settle down and doesn’t affect me so much. I have found that I can now make fun of myself and join in the laughter. I find that I have a dark sense of humour sometimes and can turn an insult into a joke at my expense, which turns the table on the bully. I have a great circle of friends now (not the most popular kids), but genuine mates who are there to support me and have my back.
I know now that I am here for a reason. Maybe it is to do genetic research into Neurofibromatosis? I want to map the genome and match it to the different clinical manifestations of NF. It might be possible to then engineer proteins to prevent NF tumours. Maybe it is to become a great Dad and husband. Maybe it is to travel and have adventures around the world. Maybe it is all of these and more."
I know there are good things in my future to come.