I recently had the opportunity to participate in one of the most mentally, physically and emotionally hardest challenges in the world, “Australian Survivor”.
Before applying I had been dealing with my own battles and was hoping that this challenge could help me learn to deal with them. I have lived with anxiety most of my life and have faced depression head on. It was this journey that inspired me to be more and do more, to help others and to make a positive impact in the world. Survivor taught me what is important in life and to me that is your health and your relationships.
I am the youngest of five siblings and have lived on the Gold Coast my whole life. I was always very active throughout my younger years; being a part of Nippers and Little Athletics. When I was 18 my grandmother passed away and I spiralled in to a dark depression. I was told it was normal to be sad after a death of a loved one, however, for me-that dark cloud didn’t lift. I lived with depression for at least 2 years and did my best to keep it a secret as I felt alone, embarrassed and lost. Soon my depression was over ridden with anxiety and it got worse, to the point where I sometimes didn’t want to go out in public because of it. I knew that I needed to face my fears and overcome my anxiety, and that is why I applied for Survivor. I needed a chance to escape and to prove to myself that I was capable and to learn to love ME again. It helped transform me into the person I am today and as such I am very passionate about making a difference and helping others to be the best version of themselves.
I met Rachel and Bella through my sister Amanda. When Rachel told me about Neurofibromatosis (NF) and that her 2.5 year old daughter Bella had it I honestly didn’t know what to say except how sorry I was, Like many others, I had never heard of it and once Rachel described the condition to me, I was reduced to tears.
Bella was born with six birthmarks and as she grew older they began to multiply. Rachel ended up seeing several GP’s who all brushed her off because she was a first time mum and told her she was over reacting (This is because of lack of awareness about NF). She ended up seeing a paediatrician and a short time later she was officially diagnosed. Bella has an entire team of specialists from a neurosurgeon to an opthamologist that monitor her for tumours. In October after Bella’s first MRI Rachel’s fears became a reality. Bella was diagnosed with a plexiform tumour on her C3 and C4 vertebrae which puts Bella at risk of paralysis if it were to continue compressing on her spine.
NF is a progressive disease and it affects each individual differently, therefore living with NF is a never-ending rollercoaster of emotion that affects not only the sufferer but also their families. I can’t imagine the fear of not knowing how a disease would impact my child. Bella’s NF is a result of spontaneous mutation so it randomly occurred with no family history, during conception- it can happen to anyone. It is common, and yet not many people know of it. Rachel had me in tears when she asked if I would like to be involved in the Cupid’s Undie Run to raise awareness for NF and much needed funds for the CTF. She explained how important the CTF are to families like hers. I didn’t hesitate at agreeing to being an ambassador for the CTF, to raise awareness about an illness that desperately needs it in order to hopefully find a cure. There are so many kids out there just like Bella, facing tumours, loss of limbs, disfigurement and learning difficulties and there is no effective treatment or cure! This isn’t a fair way for a child to live. NF has a ripple effect because it often causes disfigurement , sufferers are prone to developing mental illness or can even feel ashamed of their appearance due to society’s perception and emphasis of beauty. We as a community need to stand together and unite in celebrating difference and fighting for acceptance and empathy. People don’t know or understand NF so people who have it are often mistaken as contagious or subject to bullying.
I believe if we can all be diligent and work together to raise awareness we can make a difference and hopefully one day find a cure for NF. I know that I want to live in a world without NF!