This month, MP Henry Smith has nominated John and Vicky Elkington, parents of Keira (17), Summer (9) and Noah (6) for raising over £20,000 for Muscular Dystrophy UK (MDUK) and Noah’s Fund.
The Crawley-based family have personal experience with the charity, after Noah was diagnosed with Duchenne Muscular Dystrophy (DMD) just one week after his first birthday. Duchenne Muscular Dystrophy is a progressive muscle wasting disease that affects 2,400 people in the UK – mostly young boys – which causes weakness in the muscles and leads to premature death.
“When Noah was four weeks old he was admitted to hospital with breathing difficulties,” John, an Orthopaedic Practitioner at East Surrey Hospital says. “He ended up in Intensive Care due to him being really poorly. During his stay in hospital there was an irregularity in his bloods and they wanted to investigate further. Noah recovered from his breathing issues which turned out to be as a result of a virus, but the irregularity was still present in his bloods. This eventually led to him requiring a muscle biopsy when he was nine months old. The results of the biopsy came back four months later, Noah had Duchenne Muscular Dystrophy.”
Since the devastating diagnosis five years ago, John and Vicky, along with their family have thrown themselves into fundraising activities such as running the Brighton Half Marathon, organising and taking part in annual skydives, and last year even hosting a comedy evening at The Hawth with help from local comedian Romesh Ranganathan.
“The comedy night at The Hawth is still something that I am unable to get my head around,” John laughs. “Vicky had started a ‘Go Fund Me’ page to try and raise money for an adapted car seat for Noah, as he had grown out of the child seat we were using, but he still required the extra support that it provided as he struggles to sit upright in the car due to his weakness. An adapted car seat costs around £2,500 and is something which isn’t provided on the NHS.”
“Once the page had been set up I thought that I would send a Tweet to Romesh to see if he would retweet Noah’s page and help to raise awareness. To my surprise, Romesh contacted me and asked what he could do to help, and he said that he would arrange an event with the proceeds going to Noah’s Fund and MDUK. We were both totally dumbstruck by his offer!”
The event raised over £12,000 for Noah’s Fund and Muscular Dystrophy UK and the awareness leading up to the event meant that Noah got his car seat before the comedy evening even took place!
“I’m amazed at people’s generosity whether it is in the form of donations, or people just giving their time such as that of the team behind the comedy night. It also makes me wonder what else can be achieved, something that started off as a 140 character tweet turned into £12,000 for Noah’s fund and MDUK which was a fantastic feeling knowing that there was a good amount going towards research to find a cure.”[box type=”shadow” align=”” class=”” width=”600″]Henry says:
“On 7th September 2015 I was pleased to support World Duchenne Awareness Day. Muscular Dystrophy UK has told me that there are around 35 people affected by Duchenne Muscular Dystrophy in West Sussex.”
“It is remarkable to see the efforts to raise money for Noah. The fact that the idea for the show at The Hawth progressed from a tweet, shows the fundraising potential of social media!”[/box]
By Shelley Baker