#13- Advocacy;

The month of August was a very unfortunate time. I lost 2 very important women who I looked up to and saw as the strongest women I knew. They both were fighting illnesses and have never lost their faith or smile and always put others first. Firstly I lost my Auntie Rhonda, she was fighting leukemia for over 20 years, and was told all those years ago she would have 10 years maximum to live, But she fought hard and powered through. then exactly a week later, I lost another hero, Desiree.  Desiree was such a strong pillar in our CVS community and I’ll miss waking up to her cheery messages every morning.  Even when these women weren’t feeling their best, They always strived to make others happy.

Losing these amazing women has inspired me to become more of an advocate for my illness. To raise awareness as much as possible and hopefully one day, find a cure. I am part of a CVS group called “my travelling CVS warrior” we are a group of CVSers from all around the world, we have 4 stuffed toys which we are sending to each member on the list to raise awareness of our illness and to show the children with CVS that they are not alone and that there are adults all around the world who understand them and support them.

First up, I was sent Ellie the Emesis elephant. The plan was to take her around to different places and take “Touristy” photos with her and try and start the conversation about Cyclic Vomiting syndrome. Not long after I received Ellie, I spoke to my workplace and organised with them to send Ellie for a skydive to Raise awareness, and they were more than happy to help organise it for us. I was absolutely stoked with this news and didn’t think I could do any better. However,  I  had the thought of contacting my local newspaper and see if they would run a story on the awareness skydive and our travelling CVS warrior group.  To my Surprise, they agreed! So a large photo of Ellie going on her skydive was in the newspaper, As well as my CVS story! I honestly had tears in my eyes when I saw the story online and also in the newspaper. I felt like I was becoming the advocate that my 2 heavenly heroes would want me to be.

I remember Desiree had this quote, Which has an even deeper meaning since she has left us:

“For every CVS warrior who wants to give up the fight, There’s another CVS Warrior who would give anything to fight just one last time. that is why YOU fight. Fight for better treatment, fight for more awareness, and fight for those who cant fight anymore. They didn’t quit fighting, They just passed the torch. Its now up to you to carry the light.”

so far, Ellie and I went to the beach, she went for a skydive and we also went on a bush walk and climbed up a waterfall. The group have been enjoying all of Ellies photos, and I cant wait to see her on her next adventure, While I go on more adventures with the other  travelling CVS toys

The loss of these 2 amazing people still hasn’t hit me yet. I’m still having my good days and my bad days with my CVS. Lately I’ve been having a few more sick days due to the change from winter to spring, Thankfully my medication has been easing the symptoms a bit.

I’m getting together some of my own ideas about a local fundraiser to raise money for CVSA or even just to raise awareness for CVS. I’m not sure on how I would go about organising such an event, Or even how successful it would be. I guess you don’t know until you try!

 

Ellie and I on our Australian Bush walk:

My Beautiful Auntie Rhonda:

Beautiful Desiree:

Ellie on her skydive with John!

My Story in the Illawara Mercury:

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