A family fund from Stanmore is planning a skydive to raise money and awareness of Duchenne Muscular Dystrophy (DMD).
The Thakrars have lived in Stanmore for 10 years now and set up the ‘Smile with Shiv’ fund when their seven-year-old son Shiv was diagnosed with DMD.
June is DMD awareness month and the family want to make the most of it by raising awareness and planning a big event to raise much needed money for DMD charities.
Shiv’s mother Sejal said: “If you were to see Shiv now you would think he looks like any other seven-year-old boy, however slowly inside he is getting weaker by the day In his early teens he will lose the ability to walk, by his late teens he will start to suffer respiratory complications and by early twenties he will to die from heart failure. This is typical for all Duchenne children. Currently there is no effective treatment or cure.
“To date with the help of family, friends, neighbours, the Stanmore community and Shivs’s school we have raised over £250,000.
“100 per cent of what has been raised has been donated to Duchenne Charities who are funding some promising research, which have helped to increase clinical trial capacity at hospitals including Great Ormand Street and we are currently supporting an important Duchenne UK project where they are looking at existing drugs that have a potential to treat Duchenne.”
The fund have held numerous fundraising events from cake sales to a bike ride from Lands End to John O’Groats and were twice selected as the charity of the year at ING bank.
Now they are looking for people to join them for their skydive to help raise funds and awareness.
For more information, visit http://smilewithshiv.org.
Picture courtesy of Smile with Shiv
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