August 2004 - Victoria Carpenter

August was so hectic! It was a riot of movement and colour, and I was so busy I hardly had a chance to turn round, IT WAS GREAT!

The Muscular Dystrophy Association got off to a fantastic start with the screening of the Auckland Medical School Student’s Association Revue. It’s like a capping revue, except that it’s done by the second year students and takes place in the middle of the year! They had kindly decided to support us with the proceeds from the show, as they study neuromuscular conditions in the second year. We got tickets to the opening night as well as to the swanky do beforehand. The show was great! I haven’t had so much fun in a long, long time. A series of comic skits and a lot of digs at Engineering students!

The first Saturday of the month we decided to call “Have a Go Day.” We invited all the boys with Duchenne Muscular Dystrophy and the kids with Spinal Muscular Atrophy who are in power chairs in the Waikato region to have a go at wheelchair sports. We got them all together in the Hamilton Girls High Gym, gave them hockey sticks and let them rip! It was a really moving day, talking to the Mum’s and watching the joy on the kid’s faces as they not only mastered new skills, but also learned to play wheelchair hockey and spend the whole afternoon with other kids just like them. You don’t really realise how isolated the kids feel until you see them belonging. It was so uplifting and we got such a good turnout that we’ve decided to make it a monthly event, get a team together and start competing with the Auckland kids.

The next week I was off to Dunedin to visit with Margaret and Anita, other World of Difference recipients. However, I missed the opportunity to see any penguins! I was there for the Kaikorai Valley School Wearable Arts Awards, an event organised by some extremely dedicated teachers and amazingly creative pupils. I took the opportunity to talk to Years 7 & 8 in Assembly to explain all about Muscular Dystrophy because they have a fellow schoolmate in year 9 with Duchenne.

The show was INCREDIBLE, look at the pictures and you will see just how amazing the garments were, how talented the entrants are, and how privileged I felt to be part of it all. The fashion parades were interspersed with performances from some of the schools top dancers, musicians well as a surprise Teacher’s segment. The show was so popular they had to shoe horn them into the hall. I was, and am still lost for words.

You will remember how I told you about the documentary we made with the help of the AUT students? Well I had a brainwave, why not burn it on to a CD and send it out to all tertiary institutions involved in the education of health professionals as a sort of ‘calling card’ for our neuromuscular educator? We sent out over 60 CD’s, and I bet every nursing school and Polytech in the country invites Judy to go and speak next year!

This month I also spent time working on getting one of our families a new van. Two of the kids I met in March at Kidzfirst, a brother and sister, both with Spinal Muscular Atrophy, need a van that can take two wheelchairs. The van they have only takes one, and their poor Mum has to spend half her day going backwards and forwards, making double trips to school and playcentre etc. Sometimes she carries the littlest one, but one wet, winter day she slipped whilst carrying him and broke his leg when she fell.

They are such a lovely family and their life would be so much easier if they got this van, I hope that our application to a community trust is successful. We will keep positive, and if this application doesn’t yield us the money then we will just keep trying. I don’t have to dig deep to find the motivation in this job I can tell you.

See you next month.

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