About Smile with Shiv
About Smile with Shiv
In April 2014, at the age of 3, our fun loving, caring and ever so cheeky son with the most beautiful smile that is always commented on was diagnosed with Duchenne Muscular Dystrophy.
Shiv looks like any other boy his age on the surface; but his condition means that he is getting weaker by the day. In his early teens he will lose the ability walk, by his late teens he will start to suffer respiratory complications followed by heart failure, it is unusual for someone with Duchenne to live past their 30’s . This is typical for all those who live with Duchenne. Currently there is NO CURE or NO EFFECTIVE TREATMENT that will treat all those who live with duchenne.
Coming to terms with Shiv’s condition has been extremely difficult for us and continues to test us on a daily basis; however, very quickly after entering the world of Duchenne and speaking to Duchenne organisations, scientists and other families impacted by this terrible condition, we now know that there is hope as researchers are working hard to find a treatment and potential cure.
We find ourselves in a race against time; we cannot sit back and wait for a treatment or cure to materialise, but need to act now to do what we can to speed up the process. for this reason we have set up the “Smile with Shiv”, and our goals are simple:
- Raise awareness of Duchenne Muscular Dystrophy
- Raise as much money as possible so it can be given to those working to save Shiv’s life and thousands of other children with this horrific condition
- Work with the Duchenne community to ensure we have access to potential treatments as early as possible