Williams fund

This is my son William. He is a normal mischievous five year who loves lego, diggers and star wars. In 2018 after routine blood tests he was diagnosed with Duchenne Muscular Dystrophy. This was a total shock to our family, we had never heard of this condition and never ever thought something like this would affect us.
Duchenne Muscular Dystrophy is a progressive neuromuscular condition that means the muscles weaken and waste. Due to the lack of dystrophin the muscle fibres are replaced with fibrous tissue. It affects all the muscles groups in the body including the heart and respiratory muscles along with the major muscle groups that enable us to walk and use our arms.
At our first consultation we were told that he will loose the ability to walk by the age of 8-11 years old, as the condition progresses he will lose the ability to lift arms, and enevtably the ability to breathe without support, to be told that your son will probably not live beyond 30 and to be faced with all these challenges is destroying. 
Despite this diagnosis we are full of hope that treatments and research are constantly improving and developing. We are determined to make as many memories and positive experiences for our son as we can. We have been given the opportunity to access a clinical trial in the U. S. it is known as the Polaris Dmd trial. The name is fitting because Polaris is the brightest star in its constellation and is also known as the North star (which is the name given to  ambulatory assessment used for this condition). www.catabasis.com The medication Edasalonexent has been shown to preserve muscle function and substantially slow Duchenne disease progression. This will mean a gruelling year of travel and hospital visits for William but we are hopefull that the results will be worth it. 
We are hoping to raise funds to aid our four trips to the U. S. A. over the next twelve months.