Smile With Shiv – Duchenne Muscular Dystrophy.
Smile with Shiv – Shiv is a young boy who, at the age of 3 was diagnosed with Duchenne Muscular Dystrophy. This 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.
One of Shiv’s passions is Liverpool Football Club, so a bespoke pair of spoke guards was designed for Shiv, and according to his father, ‘Shiv absolutely loved the spoke guards and was a very happy chappy’.
To help with the fight against Duchenne Muscular Dystrophy, a Facebook page has been set up called ‘Smile with Shiv’, the objectives of which are
- 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
The link is https://www.facebook.com/smilewithshiv/
A web page which can be found at http://smilewithshiv.org/
Shiv’s family have had varied events in the past to raise for research into Duchenne Muscular Dystrophy, such diverse activities from a return bike ride from London to Brighton, a Gala Dinner. In addition to many bake sales, funds have been raised from a Scootathalon, a mini fun triathlon for children between 4 and 8. Photos of all activities can be seen on Smile with Shiv’s Facebook page.
Before Christmas 2018, Smile with Shiv donated over 200 presents to children in Great Ormond Street Hospital and in November 2018, Shiv and his family were featured and interviewed on BBC Breakfast in an article to highlight issues which may be faced on getting lifesaving drugs when Brexit happens.
Shiv is also a member of the Aspire Powerchair Football Club.
Please like Smile with Shiv Facebook page and follow the links to find out more about Duchenne Muscular Dystrophy.