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I am dedicating this column to my unexpected journey to an eventual diagnosis of Pompe disease that motivated me, more than ever, to pursue my dream of living life fully in sports and fitness.

Doctors told me I might not be able to walk again and possibly suffer mentally due to the effects of Guillain-Barré syndrome (GBS). My father was determined to get me moving again. He called me into the pool and had me swimming before I could even walk properly as I battled GBS.  

This started my passion for the water and ocean. The healing effects that water has on the body are unbelievable. I worked in Australia for a year in hopes of pursuing my dream of becoming a professional swimmer but soon realized that I was a very small fish in a very big pond of really good swimmers. 

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I grew up in a school that encouraged outdoor activities outside the norm of soccer, hockey, tennis, etc. I learned how to mountain bike and run trails, and decided to combine these activities in a sport called Xterra, an off-road triathlon. Because I always believed in an active lifestyle, I knew how critical embracing that lifestyle was to support a healthy life.

My love for sports grew more and more the older I got. I studied sports science and always had a dream of becoming a professional athlete. When I started my journey to becoming a pro at Xterra, my disease decided to rear its ugly head.  

Every time I would race or train, I would be fine for a while, then it would hit me, this excruciating pain in my legs, so painful that it completely stopped me in my tracks and I would physically have to lift my legs with my hands to move.  The first time this happened I thought it must be a virus, something that will pass, maybe a really bad cramp. But the more I trained and the harder I worked the more frequent the episodes would happen.  

How many people are in this situation? How many people have had their dreams shattered but they don’t even know what is wrong with themselves? 

Read about experimental therapies for Pompe disease

This led me to a long battle in trying to obtain a diagnosis for my symptoms. After 10 years, I was finally diagnosed with Pompe, a rare glycogen storage disease. This rare disease is associated with skeletal muscle weakness causing mobility problems and affecting the respiratory system and functioning of the heart and lungs.

Yes, it took me 10 years to finally be diagnosed, and as I have mentioned in my previous articles, I consider myself one of the lucky ones. I knew what was wrong. There are so many people who are living without knowing what is going on in their bodies. They have had to stop doing what they love because of a disease that has taken over their lives and they don’t even know what they have. 

I continue to race while having a rare disease. I now race for a different reason—to create awareness for others out there like me. I want to show others there is hope and that they don’t have to take years to be diagnosed. I recently received approval to race as a para-athlete, to still pursue the dream I have had for so many years but now with more purpose. 

I am so passionate about making people aware of rare diseases because the disease itself is rare but there are so many people who have a rare disease. Never give up on your dreams; they might have to change a little but never stop believing you can achieve something big or small. Just because you have a rare disease does not mean you cannot do great things.

A quote from my hero, Nelson Mandala: “It always seems impossible until it is done.”