Neil Martin is diagnosed with recessive myotubular myopathy. His story appeared in The Information Point newsletter Our World, firstly in 2015 when Neil told us about his upcoming wedding to his fiancee Ginny and how he was fundraising for a standup wheelchair for his wedding day and again in 2016 after he was married.
Neil Martin is diagnosed with recessive myotubular myopathy which has seen him using a wheelchair for the past eight years. On 1 August 2015 he will marry Ginny his fiancee of nine years at All Saints Parish Church in Westbury, Wiltshire and is hoping to raise £15,000 to buy a standup wheelchair, so he can say his vows and have his first dance standing up. Neil was inspired after seeing footage of an American army veteran hoisted up for his first dance at his wedding last year, however the standing frame manual wheelchair Neil wants cannot be funded by the NHS, so he has has begun fundraising to buy the chair himself, which will also provide health benefits, for example improved lung capacity and circulation.
Neil told The Information Point ‘Ginny and I have been together for 14 years, we met through a friend who was seeing Ginny’s friend. I asked if she had a friend and she did, that was Ginny. We started talking on the phone and hit it off straight away, talking from around nine at night until four in the morning, even though we both had work the next day. After around two months we met up and had the attraction towards each other straight away – the rest so to speak is history’.
‘When Ginny and I were dating we used to put slow records on and just dance to them in the front room which was wonderful and something I now miss, so if we raise enough money to fund the purchase of the wheelchair it would be amazing, not just for me but for Ginny. Don’t get me wrong I have no worries about being in a wheelchair, infact my life is easier now I’m in it but for one day I would like to stand, look Ginny in the eyes and say ‘I do’. It’s only a small wedding really with family and friends invited but it’s been a long time coming and now we can’t wait’.
Neil began fundraising online at the beginning of 2015 and says ‘We have also had a charity auction at which we raised £3,265.25 and we’ve been invited to attend a football tournament in June, where any money raised will be split between ourselves and another charity. We have been attending lots of wedding fairs to talk about what we are trying to achieve and have been on ITV news, BBC local radio, Heart radio, in local newspapers and a wedding magazine too. Also we will shortly be registering as a charity with the aim of helping others that need a little help with getting a wheelchair too – it is early days but out of my wish, a charity has been born.
On 1 August, Ginny and I said ‘I do’ at a church in Westbury after 14 years as a couple. Three days before the wedding, I found out that the £15,000 that was needed to buy the standup wheelchair I had been fundraising for, the chair which would enable me to say my vows to Ginny standing up, had been raised.
Only my best man Jason and Ginny’s bridesmaid Sharon knew about the chair before the ceremony. On the day of the wedding I got to the church early, so I was sat down when the congregation arrived but then when the vicar said ‘please stand’, I stood too and because the congregation had looked round to see Ginny they didn’t see me stand up. Then when everyone turned round, to watch Ginny walk down the aisle, they saw me. People were crying and Ginny was gulping down tears.
The difference the chair made on the day was amazing. On the Thursday we had the rehearsal and I was sat down with people towering around me but on the day of the wedding I was their height and it felt so good to talk at eye level again. I got to say my vows, walk down the aisle and give my wedding speech, as well as having my first dance with Ginny standing up. And now the chair is making a difference to my daily life too – I can talk with people at eye level, my breathing is better when I stand and so is my circulation which are brilliant health benefits.
In the run up to the wedding I didn’t have time to worry, about whether the fundraising would be a success or not but when I learned the fundraising total had been reached it was like, wow we’ve done it – I couldn’t really believe it. The people who helped by donating were amazing and nothing I can say would ever be enough, as without every single person we wouldn’t have got to the point we did. All I can really say is thank you, you really made our day.