CUPID’S CAMPAIGN MANAGER – RACHEL SKELTON

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Hi everyone!

Thank you so much for your support of the Cupid’s Undie Run, 2018.

Prior to working for the Children’s Tumour Foundation I was a primary school teacher and I LOVED my job. At this point I had never even heard of Neurofibromatosis. My world, my priorities, my life…everything changed in 2014 when the word “Neurofibromatosis” was mentioned to me for the first time.

On May 17, 2014 I gave birth to my first child, a beautiful girl who I named Isabella. At 4 weeks old she was covered in what looked like seemingly innocent birthmarks – but by 6 weeks old they were multiplying rapidly and it was at a paediatrician appointment that I discovered multiple café au lait spots are a marker for a genetic disorder. The following few months were a blur and it was at the NF clinic at Westmead in Sydney that I learnt Bella had NF1 caused from a spontaneous genetic mutation. The shock and fear of this diagnosis is indescribable. I was racked with guilt and even though I knew rationally that her condition was due to chance, as her mum, I felt responsible. I began researching NF and realised how poorly understood the disorder is and it infuriated me. How could a disorder that causes TUMOURS and that affects 1 in 2500 births, be so lacking in awareness?! From that day I began volunteering for the Children’s Tumour Foundation.

In 2017, after a successful Cupid’s Undie Run, where I was Race Director with Steph on the Gold Coast, I was offered a position at the Children’s Tumour Foundation. I didn’t hesitate! I gave up my teaching career and have dedicated my professional and personal life to increasing awareness about NF! Cupid’s Undie Run is our largest community fundraising event. It is vital for shining a light on NF, in getting the community talking about NF and for fundraising. NF is progressive and unpredictable and there is no cure or treatment options. Bella is three now and has tumours on her spine. One tumour is on her C3 vertebrae and is compressing her spinal cord, which can impact her ability to function normally. Bella has a team of specialists and has to have an MRI every 6 months under general anaesthesia to monitor her tumours. I want nothing more in this world than to help contribute to finding a cure for NF- or, at the very least, an effective treatment of NF related tumours.

Tumours should not be a child’s normal! In order to make a difference in the NF community, we need to fundraise. We need to fund medical research in to this condition so that we can develop a better understanding of how it behaves and how to shrink tumours that can become life threatening.

Cupid’s is an incredible event that has the power to get people talking about NF. People with NF face disfigurement or judgement due to their lumps and bumps. This is one of my greatest fears about Bella’s future (outside of the scary tumours). As a society we are so caught up on appearance. We judge and fear what we do not understand. Cupid’s encourages people to DARE TO BARE- it gives Australia a chance to celebrate difference and be proud to be uniquely ourselves. We run in our undies in solidarity of our NF friends and family and we do it to say to anyone who pays attention that it is ok to be different, it is ok to be YOU.

The reality is, in all of our perfect imperfections, stripped down, we are all the same!

 

Category: Blog, Uncategorized

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