MDF Magazine Issue 53 August 2017

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People Getting it right White Hart Lane By Steve Davies My name is Steve and I have Becker Muscular Dystrophy and am a big Tottenham fan. My experiences of going to live football have always been very positive and I was quite surprised to hear that other football grounds seem to be letting down its disabled fans including those in the top division. I went to my first game about 4 years ago after a chance meeting with a friend of a friend at an MD fundraising event who organised accessible tickets. I didn’t think that I would ever go to a match due to my disability but was pleasantly surprised at the access and support, I got the bug big time. Since my first outing I now get to a few games a season with either my sister or my mum who get a free personal assistant ticket. Currently I’m in a bit of a transition phase between still being able to walk and using a manual chair when attending games. However this is not a problem as I can wheel to my seat and transfer taking away the worry of falling and, when the time comes, have the option to sit in the wheelchair area. Tottenham’s ground, White Hart Lane is an old stadium, and like many old buildings making them disabled friendly is not always simple, however here they have worked hard to provide great facilities for disabled people both in wheelchairs, ambulant supporters and those in between. They have facilities such as locked disabled toilets with the disabled stewards having RADAR keys preventing use and abuse by others. They also have separate refreshment facilities to reduce queuing time and avoid having to negotiate large numbers of people. The disability stewards are a super group of people who are always very welcoming to the regulars and first timers alike. Nothing is ever too much trouble which all adds to the great experience. The view from the seats I have sat in have generally been good apart from when people around me stand up celebrating a goal. There is also one obstacle which is nothing to most people, a small step no more than 4 inches high between the front row and the path in front of it which I think is there to stop the front row from flooding. The stewards are always very apologetic about this every time I go as it takes me time to negotiate but they are always there to assist, along with whoever I’m with or fellow supporters, so it’s never an issue. The club seem clued up on disability with their own disability liaison officer, Shirley, who is always available on the phone to assist with any issues and she is present on match days. They also have a Disabled Supporters Association which I am a member of who provide a voice to the club regarding all issues surrounding disability. They are in the process of building a new stadium and seem forward thinking to be able to improve on what is already in place. This is exciting from my point of view as the improvements will enhance the experience such as having no small obstacles to overcome and better views. I know I’m fortunate to support a team who can make necessary changes as not all clubs are able to and some think they can just shy away from it. Going to live sport is great so why should having a disability mean missing out or putting up with poor conditions? This is why the Trailblazers campaign on access to spectator sports is so vital to highlight issues to improve access for all and make that difference. Article published 23/09/2016 online at: http://www. musculardystrophyuk.org/blog/getting-it-rightwhite-hart-lane/ 22
People ‘She wins all the races’ – A tragicomedy with biscuits By Sheonad MacFarlane A review on the hit show ‘She Wins All the Races’. It’s the 1970s and Belinda is a fun loving, living life to the full little girl. She has two brothers: Older and Younger. They are somehow different. They don’t walk properly. There are family secrets hidden in a drawer, “the drawer she must never open”. One day she opens the drawer and her world is blown apart. Duchenne muscular dystrophy enters her life. What can she do to save her brothers? She needs help… A microscopic Wonderwoman travels through the body of Younger to the left calf muscle, but the muscle caves in around her. Duchenne is not something that can be battled against; but instead something is missing. She dons her supersleuth hat and meets the elusive Dystrophin in a seedy Becker Bar: there is hope in research – a treatment perhaps and Science shines bright. As time passes the reality of the disease must be faced. Her brothers become wheelchair dependent, their muscles weaken until they can no longer keep their eyes open. The family becomes four… and then three as they say goodbye. She Wins All the Races is a quirky tragicomedy with biscuits – Tunnock Teacakes and all! – and a modicum of Abba. It tells the story of a little girl who has two brothers living with Duchenne muscular dystrophy. You understand the loss the family feels, the ever present grief and sorrow, following their diagnosis. You see Belinda, desperate to be seen by her parents ever focused on the needs of her brothers. You feel the despair as they wrangle with their own spirituality, Jesus ever present in the room. You imagine everyone living life to the full, wheelchairs racing in the park, Match of the Day on a Saturday night. Shelley O’Brien tells her real life story openly and honestly. The show is challenging: emotions run close to the surface; the “beast in the labyrinth” feels ever present in the room; the physical deterioration evident in the graceful movements that she makes; the loss of her brothers acutely palpable as the balloons floating high are carefully packed away. Music plays quietly in the background. Life carries on; bittersweet perhaps but it carries on: “Happiness, happiness, the greatest gift that I possess, I thank the Lord I’ve been blessed, with more than my share of happiness” There are tears falling silently down my face as Shelley takes her final bow and I am in awe of her strength and courage. Yes, She Wins All the Races is challenging, but educational and, for me, cathartic too. There is courage and resilience abundant throughout, but in the end what you are left with is love, the love that binds this family together throughout their journey with Duchenne. The love that encouraged Shelley to tell her story. This same love carries many families through each day as they live with neuromuscular disease and that is a wonderful and powerful force. Shelley O’Brien is one woman on a mission, spreading awareness of Duchenne muscular dystrophy across the UK. If only Wonderwoman could really help in the fight against this muscle-wasting condition… Article published 19/10/2016 online at: http://www. musculardystrophyuk.org/blog/all-posts-by-shewins-all-the-races-a-tragicomedy-with-biscuits/ 23
Page 1 and 2: Spring Issue 53 August 2017 R25.00
Page 3 and 4: DF Magazine 05 MDF notice board 06
Page 5 and 6: Subscription and contributions to t
Page 7 and 8: National Institute of Neurological
Page 9 and 10: MD Individuals with CMT1 typically
Page 11 and 12: EMERGENCY ALERT CARDS Muscular Dyst
Page 13 and 14: Health Limb-girdle muscular dystrop
Page 15 and 16: In the White Paper on the Rights of
Page 17 and 18: Events Day 1. JHB to Klerksdorp to
Page 19 and 20: Events A special day for a special
Page 21: Molly, my life-changing dog People
Page 25 and 26: People My Story Marinus Mans I have
Page 27 and 28: Research Congenital myotonic dystro
Page 29 and 30: Prof Amanda Krause, MBBCh, PhD MB B
Page 31 and 32: Motorised Wheelchair Maintenance A
Page 33 and 34: Craft Day for Children with Duchenn
Page 35 and 36: Gauteng Branch Welcome Beauty Matim
Page 37 and 38: KZN Thank You to Westville Boys Hig

MDF Magazine Issue 53 August 2017

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