Jenson James Edwards is just like any other three year old boy, full of fun, love, life, adventure and mischief. He has such a cheeky and extremely loveable nature that you cannot help but fall in love with him straight away. The only difference with Jenson is that he has been diagnosed with Duchenne muscular dystrophy.
Duchenne muscular dystrophy is a muscle wasting condition that results in premature death. The death age can very from any where in there teens to early thirty’s. Cause of death is normally Cardiac and/or respiratory failure. If that’s not bad enough before this Jenson will have to suffer muscle failure in all muscle in the body, starting from the age he is now just three years old. In almost all cases children by the age of ten will be wheelchair bound. Shortly followed by all other muscle failure from his eye lids right down to his toes. There is no cure for this awful condition so we as parents will have to watch our beautiful boy deteriorate year on year before finally having to lay him to rest at such a young age.
We as parents cannot describe the heart ache and pain this has brought upon us. It’s been nearly five months now since Jenson was diagnosed yet it has not gotten much easier to come to terms with. We don’t think we will ever be able to fully come to terms with it but we hope we will learn to cope with it better. We have had to greave for the life we once had for Jenson but now live in hope, hope that one day they find a cure to this awful condition.
On this webpage which is just at the start of it’s development, we aim to keep everyone up to date on everything happening in and around Jenson life from his wellbeing and movements right up to events being held in his name. Also we are working alongside muscular dystrophy UK working towards finding a cure for this awful condition and raising as much awareness and much needed funds as possible.
DUCHENNE MUSCULAR DYSTROPHY
Mutation in the Dystrophin gene located on X-chromosome
Skeletal muscle lacks protein dystrophin (a large protein that provides structural stability to the muscle cell’s plasma membrane)
Its absence leads to constant leakage of Ca into the muscle cell
Ca activates proteases that start damaging the muscle
Leads to increasing muscle weakness and fibrosis
Symptoms start at 2-3 years, patient wheel-bound at 8-10 years
Usually die at about 21-30 years of age (usually Males)
Death is usually due to respiratory failure or heart failure as the respiratory or heart muscles become too weak.