Ahead of World Duchenne Awareness Day in September, I was in contact with a policy officer at Muscular Dystrophy UK, who told me that there are around 35 people in West Sussex affected by Duchenne muscular dystrophy.
Duchenne muscular dystrophy causes muscles to weaken, leading to increasingly severe disability. Around 100 children are born every year with the condition.
This affects muscles used to move, meaning most children will use a wheelchair before the age of 12. It also affects the heart and vital breathing muscles.
Many people reading this column will be aware of one young man living with Duchenne muscular dystrophy in Crawley; five year-old Noah Elkington.
At the Hawth last week, Crawley’s own Romesh Ranganathan hosted a show he put together which raised a fantastic £11,647.99 for Muscular Dystrophy UK and the Elkington family.
Well done and thank you to Romesh, the other comedians who gave up their time – Jon Richardson, Russell Kane, Simon Evans, Stephen Grant, Tom Allen and Suzi Ruffell – and to everyone involved in ensuring a sell-out show with an audience of 850 people.
The family’s existing fundraising efforts have been going towards a customised car seat for Noah, which would ensure he is safer in the event of an accident, and also for a specialist wheelchair.
I was pleased to continue my support for Muscular Dystrophy UK on the second World Duchenne Awareness Day, which took place on 7th September 2015.
Muscular Dystrophy UK is the leading charity for individuals and families living with Duchenne muscular dystrophy. They provide support for people living with the condition by putting money towards cutting-edge research, as well as offering emotional and practical support and promoting independence.
One of the themes of last month’s awareness campaign was to ensure there is greater support for families. While there has been progress in the specialist care for boys and young men with Duchenne muscular dystrophy, it is important that the right support for mental health and wellbeing is a priority as well.
There are currently no treatments for most of the muscle-wasting conditions supported by Muscular Dystrophy UK.
Since 1959 the organisation has invested more than £55 million in research into muscle-wasting conditions, which has only been possible due to the generosity of donors and supporters.
The money raised at the Hawth last week has gone to support Noah and the Elkington family, as well as to Muscular Dystrophy UK.
For more information on Muscular Dystrophy UK, please go to: www.musculardystrophyuk.org
If you would like to donate to ‘Noah’s Love’ – the fundraising page set up by his family, please visit: www.gofundme.com/ksdhc4