Stevie and Faye’s Story
Stevie, age 30, and Faye, age 33, are an amazing couple from Watford who are both wheelchair users, owing to different physical conditions. They are also parents to son Rowan, aged 5. Faye said, “I’ve got a neuromuscular condition called type 2 spinal muscular atrophy. In a nutshell, my muscles are very weak, meaning I need help with physical tasks and use an electric wheelchair to get around. Finding out I was pregnant was one of the happiest moments of my life.” Stevie said, “Mine’s a muscular condition called Duchenne muscular dystrophy. I use a wheelchair to get around all day too. We just always wanted a family together. We have 24-hour care to help us look after ourselves and our little boy, Rowan.” Faye saysshe’s loved every bit of being a parent, but it does come with a few tough days, here and there. Stevie feels that he toughest thing is when Rowan falls over and hurts himself. But the good thing is they’ve got someone with them all the time. As soon as Rowan wants his Mum or dad, the assistant picks Rowan up and just puts him on Stevie or Faye’s lap. They both feel that the benefit of their situation is that they’ve got a very independent little boy and that’s starting his future off right for him. Sadly, they have experienced discrimination, but they know that every parent is judged. Same-sex parents, single parents, every kind of parent. They both firmly believe that the thing to remember is that as long as you and your child are happy, and you’re doing the right thing for your family, then you don’t need to listen to it. Stevie concludes by saying, “Becoming a parent was one of the greatest things I’ve ever experienced. It’s definitely the most joyful thing ever.”
By Stevie and Faye
Jack Plays For “The Baggies”
Jack Gauder, age 11, has always enjoyed having fun with his friends, spending time with his brother, and anything to do with sport. But, as Jack uses an electric wheelchair, joining in with his friends when they were actually playing sport was very difficult and Jack felt increasingly frustrated. However, all this changed when Jack discovered Powerchair Football and started playing for the West Bromwich Albion “Baggies” – and he just loves it. Jack’s parents, Emma and Matt, said, “We couldn’t believe how happy Jack was after he played his first game of Powerchair Football. He realized that he could play football just like other boys his own age by being part of a team and having fun.” Jack, who is keen to tell others about the sport said, “All you ever really see is normal football, so once I started using an electric wheelchair, I thought I’d give Powerchair Football a go because I wanted to do things that everyone else my age was doing. I still have lots to learn, but the main thing is that I’m having so much fun. You never really see Powerchair Football showcased anywhere and I think it should be promoted more to allow people to see what an amazing sport it is. Just because a person has a disability doesn’t mean they shouldn’t be able to play sports too.” Emma, Jack’s Mum, said that their proudest moment was when Jack scored a goal in his debut match, on Father’s Day weekend and his Dad was there to see it!
By Emma and Matt Gauder
Alfie Tickles The Ivories
Alfie Yates (age 16) from Leeds took his Grade 5 piano exam and passed with a Merit. Having initially experimented with the trumpet, at a young age, and recognising that this might not be the best instrument for him to pursue, Alfie had tried the piano for a couple of terms when he was about 9 or 10. As boccia started to take up more of his time (and even whole weekends) the piano fell by the wayside. However, with boccia becoming increasingly challenging as a thrower and not yet wanting to become a ‘ramper’, Alfie found the time and inclination to take up the piano again. Lockdown, perhaps, created quite a lot of time at home for piano practice and Alfie really enjoyed mastering a range of different pieces. Conscious that there may be limited years ahead that Alfie has the arm and shoulder strength to tinkle the ivories, he took the bold decision to skip Grades 1 to 4 and plunge straight in with Grade 5. With some incredible hard work, determination and the fantastic support of the music department at his new school, the gamble paid off. As ever, we feel incredibly proud of Alfie’s “can do” attitude (something that many of our DMD boys seem to share) and perhaps part of the DNA mutation that the medical experts haven’t yet fully recognised in the way that we have!
By Sam and Rachael Yates.
Declan’s Driving Ambition
When my son, Declan, was 19 he fulfilled a life-long dream to pass his driving test. Declan, pictured with me, his Mum Alexandra, had been obsessed with cars from a young age. However, after being diagnosed with DMD at the age of eight, he’d given up on his dream of being able to drive. Declan told me he just wanted to lead a normal life. He’d always been obsessed with cars, ever since he was young. He was part of a car club, spent hours every day on YouTube watching car videos, and twice he’d been to watch Top Gear being filmed. His life revolved around cars. For many years we believed that he would never drive. But then, when Declan was 15, we were told by another family that it was possible through The Motability Scheme. Declan passed his driving test the very first time he took it. Our family and friends say they feel safer with him driving than most people, as driving his wheelchair has given him good spatial awareness!
By Alexandra Spencer
Matt Berry is the BC3 National and UK Champion in Boccia. He is part of the GB Team and recently won a silver medal at a World Challenger in Poland, giving him a World Ranking of number 30. When Matt was 20, he was one of only two BC3 Boccia players to be selected to go to Russia to represent England in an International Competition. At that stage, Matt was part of The England Lions Boccia Squad, which made him eligible to compete internationally. Matt had also been awarded a Sports Scholarship by Portsmouth University, where he was studying for a degree in The Faculty of Engineering.
Matt started playing boccia when he was at school, was chosen to join The Boccia England Talent Pathway, and then moved up to England Lions. Two years later he was selected for the England Team and he is now part of The GB Transition Squad. He has competed at an international level many times, both individually and as part of a team. In addition to competing, he runs his own elite boccia club for England and GB players like himself, and is a player advocate, coach and mentor.
By Sue Berry
Jonathan – An Inspiration To Us All
Jonathan Gilmour, from Hampshire, wrote this article for us when he was 34. In it, he is remarkably positive for someone who faced great challenges for most of his life.
He explained, “I’ve known from a very young age how fragile life is and knew I couldn’t let my condition hold me back. We must make the most of our lives when we can.” Jonathan recalled, “My academic progress was quite slow, compared to other children, and I’ve never been any good at maths, which can be common with DMD. Some teachers thought my disability would hold me back more, but living with this condition is about making the most of things.” Despite undergoing spinal surgery during his A-levels, Jonathan still got straight A’s and secured his place at St John’s, Cambridge, to study Theology and Religious Studies. He graduated with a First.“I was the first person in my family to go to Cambridge. Other disabled people need to know that having a disability does not mean that the doors to the world’s top universities are closed to you. With Duchenne, you get used to facing many challenges in your daily life that affect your ability to do what you want and when you want to do it. I suppose lockdown and the threat of Covid-19 has been another example of these challenges – but one that ironically has led society to get a little insight into what those of us with Duchenne face every day.” In conclusion, Jonathan said, “I’ve learned to just get on with things, and if I can do that, anyone can.”
By Jonathan Gilmour