Wiltshire couple set up charity after daughter's diagnosis
They want to raise money for vital research
Last updated 3rd May 2022
A Wiltshire couple are officially launching a new charity this weekend, to try help with awareness and research of a disorder their daughter has.
Mike and Sophie Howes from Sutton Mandeville have set up ACE SMA, as their daughter Anouk has Spinal Muscular Atrophy.
SMA is a genetic condition that makes the muscles weaker and causes problems with movement.
Anouk was diagnosed when she was 18 months old.
Fortunately she got drug treatments within a few weeks and she went from being told she would be in a motorised wheelchair forever, to now being able to walk and move around fairly independently at the age of 4.
So the parents now want to raise money for some vital research to help other children get the physio and support that they'll need.
They're working with a professor from the University of Oxford to boost the research and do the world's first clinical study into the impact of physiotherapy on the condition.
Mike told Greatest Hits Radio:
"It's a very difficult condition which affects young children and it's a very aggressively deteriorating condition. So once you're diagnosed with it, you begin to lose motor skills at quite a rapid rate until unfortunately you die. But about two years ago, the NHS started funding a new revolutionary drug, which basically stops any deterioration in the condition and in many cases really enhances children's abilities as well.
"So really there's this new generation of kids who are gonna get this treatment who actually will be able to be much more mobile and much more independent. But the sort of complementary therapies and the complementary assistance to go alongside the drugs in terms of physiotherapy, encouraging movement, encouraging exercise hasn't really caught up with the with the drug side of stuff so what we're wanting to do is to find ways to enhance disability beyond just the drug treatment, so the more exercise you do, the more you use your muscles, the more they'll be able to perform and the bigger improvements people will see."
On Saturday (7th May), they are officially launching ACE SMA at Messums in Tisbury.
They're holding a silent auction to help boost their funds, with people able to bid on things like a villa for the week in the Caribbean, a rugby training session with England international Sam Underhill and a Mick Jagger signed England cricket shirt.
All bids can be made on their website.
Sophie said:
"One in 10,000 children are born in the UK with SMA and the sad reality is before the treatment, these children weren't living past the age of two. So now that there is treatment, I think people are gonna see a lot more children with SMA being in wheelchairs or are actually able to walk around. So I think the awareness of the condition is really important because there are gonna be more children with the condition that are able to get around, which is amazing, really considering where we were even five years ago."
You can visit acesmalaunchevent.co.uk to find out more about their charity.