For Alex - a fundraiser to help cure DMD

In 2018 Alex was diagnosed with a rare, life limiting disease called Duchenne Muscular Dystrophy (DMD). Duchenne affects 1 in 3,500 children, mostly boys. It is usually linked as a hereditary condition, however almost a third of cases have no previous family history, and is a brand new mutation causing the disease, which is what occurred with Alex.

Duchenne affects all the muscles of the body, starting with the extremities of the legs and arms, before it finally, and fatally, attacks the muscles of the heart. Muscles degenerate and are replaced with fatty tissue, eventually losing their ability to contract.

The majority of kids lose the ability to walk between the ages of 8 and 12, with some happening much sooner. While advances are being made in treatment and care, most kids will not see their 30th birthday, with many more passing at much younger ages.

It is a harrowing disease that sees these young children slowly lose their ability to play, walk and even feed themselves.

They develop respiratory as well as cardiac issues as the disease progresses, before they eventually lose their long battle with Duchenne.

Alex is an intelligent, curious, funny, kind, sweet, inventive boy who loves nothing more than figuring out how things work. He has a completely unique outlook on life that is a blessing to us. He has an inquisitive mind for science and engineering, always looking to carry out experiments, no matter the mess it creates. He is truly remarkable and we are fighting to keep that innocent curiosity alive. We are fighting to keep this beautiful boy with us.

Alex follows a strict regime of medications and supplements, never with a complaint, and faces all his appointments head on. As well as wearing night splints, stretching, physio appointments, doctor appointments, blood tests etc., just to ensure he stays as he is. While his daily care activites are all effective, they are merely slowing down this disease that will one day catch up to him if we don't find a cure. 

Each day our lives are filled with dark shadows and silver linings, but when we see Alex play, or laugh uncontrollably with his brother Dean, those dark shadows are pushed further away and renews our need for a cure. 

We are fundraising to help pay for treatments, for care, for his future needs. We are fundraising in the hope of a breakthrough in treatments, we are fundraising for a cure, we are fundraising to be able to provide the best care for our boy as the years progress. 

Not only that, we are fundraising for further research, further treatments and ongoing hope that one day this will not be the complete and utter devastating diagnoses it remains.

Please donate if you are in a position to do so, and if you are not, then please share. Spreading awareness of this disease is a benefit to us while fundraising.

You can follow Alex's journey on instagram.com/foralexdmd/

#ForAlex