Thanks for taking the time to visit Smile with Shiv's JustGiving page.
In April 2014, at the age of 3, our fun loving, caring and ever so cheeky son Shiv with the most beautiful smile was diagnosed with a horrible condition called Duchenne Muscular Dystrophy (DMD).
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 and by early twenties he could die from heart failure. This is typical for all Duchenne boys. Currently there is NO CURE.
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 really 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
We ask you to 'Smile with Shiv' and help us reach our goals. Please also visit our web site www.smilewithshiv.org
We are working with the Muscular Dystrophy UK, a leading UK charity, to raise as much money for the Duchenne Research Breakthrough Fund to help find an effective treatment and a cure for this horrible progressive condition.
We will be organising many fund raising events along the way. Please look out for details here, our website, our Facebook page and our twitter. In the meantime, any donations would be gratefully appreciated.
Thank you so much
Manoj, Sejal and of course Shiv xx
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.