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I was first diagnosed in 2016 with Pompe disease, a rare disease that causes breakdown and weakness in my muscles. When I was diagnosed, I was struggling to perform everyday normal functions, and my heart and lungs were becoming weaker.

Sport is my passion, and not being able to do any form of sport was very concerning and sent me into a deep depressive state. Through the intervention of the rare and expensive medication I receive every two weeks in an intravenous drip, as well as pure persistence in not giving up, I try and perform some small form of exercise every single day without fail.

Read about the diagnosis of Pompe disease

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I studied sports science in the hopes of one day following my dream of becoming a professional athlete. Because of Pompe, this is unfortunately no longer a reality for me.  I now coach over a hundred athletes in various sports from triathlon, mountain biking, trail running, swimming, and surfing. I still believe that as a coach, I need to set an example for my athletes and compete in as many sporting events as my body allows me.  

My goal is to show my athletes that if I can do it with a rare disease, then so can they.  I believe I have proven myself as a coach and ambassador for rare diseases showing others that there are no limitations to life, only the ones you put on yourself. 

This is not an easy road by any means, and every day is a struggle, just waking up in the morning and getting out of bed is painful. I recently took part in our provincial triathlon championship race. Running is the most painful thing for me as this is when my body looks for glycogen quickly, and often I end up in excruciating pain, unable to run or even walk.  

Many patients with Pompe disease are bound to a wheelchair or unable to even walk around, let alone run. I refuse to get to the point where I cannot do what I love. I have been experimenting with running slowly, building up slowly with my dogs, and giving my body small amounts of glucose in the form of energy jellies whilst I exercise; in this way, I am constantly keeping glucose present for my body, and so it does not have to look for glycogen and in turn avoid any complications with further muscle breakdown. 

This seems to help my body not break down and allows me to run further than I usually get. It’s not a perfect recipe as some days my body will hurt, and the pain will be so bad I have to walk, whereas other days I am able to run through it. I also really ensure that I stop consuming any form of carbohydrates or sugars towards the end of exercise so that I do not have any excess energy left over that my body will store in the form of glycogen.

I had an incredible race at our provincial triathlon championships and managed to win my age category and come third overall and run the entire 10km of the race.  This, in my eyes, is a win and once again shows others that anything is possible, and we have no limitation to what our minds can allow our bodies to do. 

Not only do I want to set an example for able-bodied athletes but to those that have been diagnosed with Pompe to show them that this is not a death sentence and that they can live a reasonably normal life, do things that other people can do, and be sporty.  I am constantly learning more and more about my disease, and with every race, I walk away with the knowledge that I can give others to help them.