Jason’s Journey with Duchenne

By Christine, Duchenne muscular dystrophy, South Africa, February 6, 2020

Water Wheels in Seychelles

It was the darkest day when we received Jason's diagnosis in July 2013. He was 6 years old. 
 
We had never heard of Duchenne Muscular Dystrophy and couldn't believe that our only son has a progressive muscle wasting disease that affects all the skeletal muscles including the heart and lungs. 
 

Doctors and specialists told us that his frequent falls, delayed speech and unable to climb stairs was all late development and that he would catch up. One of the signs of Duchenne is enlarged calves (scar tissue) they ignored this. We thought Jason had big calves because he toe walked which is common with Duchenne. 
 

After lots of research which we continue to do everyday we have accepted the condition now and we are determined not to be defeated by this 'monster'

Jason stopped walking in March 2017 but that hasn't stopped us from enjoying our travels and activities we enjoy. We find a way to make it work. 

He is heavier now and going into the ocean was difficult but we came across the Water Wheels and he is now able to enjoy the water like everybody else. 

Jason has been an inspiration to many with a heart of gold and positive outlook on life despite his challenges.

His motto, never give up! Make each day count 

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