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Paralympian Kelly Cartwright writes about the scary moment she found out she had to amputate her leg.

At fifteen, my life revolved around netball and the beach. I had grand ambitions to one day represent Australia in the sport I loved.

While playing netball, my knee was a constant source of pain, but doctors kept assuring my parents and I that it was only growing pains.

The issue was that two years on, these growing pains were not going away, no matter how many physiotherapy appointments I went to. After doctors performed yet another scan, I was told that I had a cyst deep in my knee joint, but this would eventually go away on its own.

Despite the doctors’ assurances, I opted to have minor surgery to remove the cyst because they said I could have two weeks off school, and being in year 10, I thought this was ideal!

Kelly competing at the London Paralympics in 2012. Source: Getty

A fortnight after I had my cyst removed, my parents and I got the call that we all needed to come back into the doctors for a follow-up appointment. It was during this appointment that we got the devastating news that I had a rare form of cancer, known as synovial sarcoma.

All I heard was the word “cancer.” I immediately thought, “am I going to die?” which to be honest I now know was a fair concern, rare cancers are the major causes of death in children under 15 years of age in Australia. One young person dies every four days as a result of a rare or less common cancer.

Synovial sarcoma is notoriously aggressive and resistant to chemotherapy, so my only real option was amputation.

LISTEN: ‘Why do you only have one arm?’ Paralympian Jessica Smith shares how she answers all kids’ curly questions (post continues after audio...)

I remember waking up after the operation, looking at the little computer screen on top of the bed and seeing the reflection of the sheets. That day was one of the hardest, but it at the same time set me down the path I am today, a proud Australian gold medallist Paralympian, World Record holder, and mum to Max.

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With my diagnosis, everything happened so quickly that at the time I never had the opportunity to meet those in a similar circumstance, and I think that was the scariest thing. For a lot of Australians with rare and less common cancers (RLC), they have never met anyone else going through the same thing.

I am proud to be an Ambassador for Rare Cancers Australia, a community that connects Australians across the country touched by RLC cancers. As a collective, we are determined to create positive change for the more than 50,000 Australians that will be diagnosed this year.

I consider myself one of the lucky ones. But Australians living with RLC cancers are a neglected group in our country. This needs to change.

We need to give every Aussie living RLC cancer the best opportunity to survive their disease with the most effective treatment plan and the right to access any cancer treatment they need without being worried about affording it.

Today, I am proud to be in Canberra with Rare Cancers Australia to launch their Rare Solutions: A Time to Act report that calls for government, the pharmaceutical industry and the research community to unite – once and for all – to bring about the change we desperately need.

It’s time to act to make timely access to new treatments and greater support a reality because without a change people will continue to unnecessarily lose their lives.

Rare Solutions: A Time To Act is holding its annual CanForum in Parliament House, with the aim of improving the outlook for the 52,000 Australians diagnosed with a rare and less common (RLC) cancer each year, and the25,000 who die annually.

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