June 2004 - Victoria Carpenter

June has been huge. We started filming our Open Door Documentary, which is to screen on TV3 later on in the year. The documentary series is so named because it is an open door into people’s lives; an unscripted conversation where people talk about their issues and concerns.

Last month I was talking to the prospective individuals. This involved getting as broad a range of conditions as possible, in terms of ethnicity, gender and age representation, to show that Neuromuscular conditions( NMCs) can affect anyone at anytime, nobody is immune.

Unfortunately, due to a lack of funding from NZ on Air, the documentary had to become Auckland on Air! I have never been a producer for a TV show before. It is a massive organisational exercise to get talent, activities and film crews all coordinated. I got into the swing of it, but the biggest challenge was making sure that everybody was filmed doing the things they enjoyed doing whilst providing a challenge to them in terms of their condition. Activities included going bowling, band practice, quad biking, sailing and simple domestic activities like climbing stairs and playing with the kids.

I had 7 stars, each with their own challenges, and each with an incredible sense of humour and stoicism. They were all amazing, although sometimes heart wrenching to film. Watching one of the women interact with her little 10-month-old made everyone cry. As her mum doesn’t have the strength to pick her up they have a “climb and drag technique”, which is sometimes more successful than others.

Another of the stars, an 18 year old 7th former at Manurewa College has Charcot Marie Tooth, an NMC which is slowly progressive causing deterioration of peripheral nerves which control sensory information and muscle function of the foot/lower leg and hand/forearm muscles. He has just had a massive operation breaking and resetting with pins the bones in his foot, and cutting all the tendons to allow him to stand flat. His mum took out a second mortgage to pay for one foot, but it has been so successful that she says they will do the other foot as soon as she can. We filmed him bowling, something he does with his friends regularly. After his operation, when he was in plaster and couldn’t stand, they carried him and held him up so that he could still bowl.

It is amazing to see the support his friends and family give him. It gives him the strength to forge ahead, finish school, have a part time job and go to University, which is often more than just one pair of shoulders can bear. We have a motto at the MDA, “it takes a village to raise a child,” in our case this usually refers to the army of carers, supporters, funders and family members that are beside, behind and all around every individual with an NMC.

The documentary is now in the editing stage. The Fundraising Team and I have finalised our branding strategy, which is crucial for tying the new ads to the annual appeal. When the new ads go to air I want to start getting on the road and talking to potential corporate sponsors. I attended a brilliant Robin Hood seminar on talking to corporates, which will be a great help.

See you next month.

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