Thanks for taking the time to visit our JustGiving page.
For those of you that know us will know that we are partial to a glass of beer or 2.We have decided to take the 'small' challenge of a Dry September 2015 where no alcohol will pass our lips for the entire month.. We re both doing this for 2 reasons. Selfishly to prove we can and to give our liver's a much needed rest but the main driver is to help find a cure for Duchenne Muscular Dystrophy.
A long term colleague and good friend’s son has been diagnosed with this terrible and currently incurable disease. We could not imagine how we would react if any of our children was diagnosed with something like this.
Shiv is 4 years old and as you will see from the pictures he has the most infectious smile and is growing into an intelligent, cheeky young boy. Shiv’s family have refused to sit back and wait for a cure or treatment to become available and have taken it upon themselves to raise as much money as possible in order to give their beautiful young child and others with the same condition a fighting chance.
They have set up a charity called Smile with Shiv with the following goals
· 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
Duchenne muscular dystrophy is a condition affecting 1 in 3,500 boys and there are approximately 100 boys born in the UK each year with Duchenne. This condition means the body cannot produce enough dystrophin, a protein needed for the muscles to grow and repair. The muscles become weaker over time and most boys with Duchenne lose the ability to walk as they reach their early teens. This devastating condition leads to breathing and heart complications which means boys like our Shiv do not usually live beyond their twenties.The Muscular Dystrohphy Campaign is doing groundbreaking work to fund research projects seeking a cure for Duchenne and funding trials in the drive towards potential treatments. They require funding to progress the research and trials and make a cure available to boys with Duchenne.
Please donate wherever you can as this will help the Muscular Dystrophy Campaign continue their groundbreaking work. You can find more information at www.smilewithshiv.org and thank you for taking the time to read my story and for your donation.