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Editor’s Note: This is the first of a 2-part series chronicling the remarkable journey of Pompe disease columnist Bruce Campbell from being paralyzed and riddled with incomplete diagnoses and hopelessness to emerging as a world-class athlete.

Being selected to represent my country at the World Age-group Aquabike World Championships is a huge victory on its own. A goal, a dream I could never ever have imagined achieving with having a very rare disease known as Pompe disease. All the doctors, specialists, and medical journals say that engaging in sports will be challenging, if possible at all. 

When I was 6 years old I survived a rare virus, Guillain Barre-Rae Syndrome, which attacked my nervous system and completely paralyzed me. I was lying in my hospital bed with a tracheostomy made in my neck and attached to a ventilator that was breathing for me. After weeks and months went by I started regaining some movement and was able to leave the hospital. While wheelchair-bound I felt super blessed to be out and breathing for myself again. 

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After months of rehabilitation and physiotherapy, I started crawling again, then walking and swimming. I soon developed this deep appreciation for movement and was so very active from this age onwards throwing myself into every sport or adventure I was offered to do at school. I competed in many different sports such as swimming, water polo, surfing, lifesaving, rugby, hockey, and triathlon.

Once out of school at 19 years old I used my passion for movement to study sports science and continued to compete in surfing and triathlon at a fairly high level. I slowly started to experience extreme pain in my body when exercising and sometimes even debilitation, not being able to walk at all. 

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This was extremely frightening to me because I thought it was the rare virus I had as a kid coming back and I immediately started seeking help from some of the top sports doctors and specialists in South Africa. Most of them would send me for a barrage of tests and scans before coming to a conclusion – They don’t know. So I was just referred from one doctor to the next without any luck or insight as to what is happening to my body. 

This process of seeking help from doctors and testing continued for years while I was slowly deteriorating with extreme pain and weakness in my body. Eventually, I was unable to walk without leaning onto something and every step was so painful that I just avoided walking at all and started spending more time bedridden than active. 

In 2015, I was finally diagnosed with a 2nd extremely rare disease known as Pompe Disease. It took me 10 years to obtain this diagnosis, although I was not happy about having this condition, knowing what it was helped me process things a lot better. Putting the correct name or finding the name of a rare disease is most of the battle won. All the doctors had been so focused on my previous virus I had as a child rather than looking at my current symptoms. None of them ever thought there was a possibility of having a dual rare condition. 

Once diagnosed I was able to start understanding what my body needs in order to try and help it not rely on our primary energy source of glycogen. I started to experiment with various diets and training methods to try to train my body to utilize fat as a fuel source over glycogen. After a year of fighting with my private medical insurance, I was finally granted approval to obtain lifesaving treatment with enzyme replacement therapy. 

I used the combination of this treatment and my knowledge in sports science to start training my energy systems as well as muscular systems in my body to obtain full movement again. I started with walking in the swimming pool as it is low weight bearing and you are able to do it without too much trauma and stress placed onto your body. Once I could feel I was improving, I started swimming again and this was a major breakthrough as swimming helps strengthen your lung capacity so well and the pool acts as great resistance training without the overloading that weights can sometimes do to the body. 

Over a long period of time, my body started to slowly develop strength and muscle mass. It was extremely slow but at least there was an improvement. This growth in muscle development was against what the doctors said was possible. I was advised to stop exercising and try to enjoy my days walking, they made it sound as if I was soon going to be wheelchair-bound and unable to walk again. 

After gaining further confidence in the swimming pool I started to cycle again and slowly developed myself even further on the bike where I could ride extreme endurance distances without too many complications with the disease. This development process of training myself to gain strength in both the swim and biking has been a very gradual process over the past 7-8 years but a process worth investing time and energy in.