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12 | InTouch JUNE 2022 What a surprise to have this article re-surface in a clear out at the National Office. Surprising because I’m amazed at how young I look! Clearly the ravages of parenting had yet to take hold. This article, 22 years ago, reminded me of those early days with a baby and all the challenges I faced as a new parent with a Neuromuscular Condition. A lot has changed since then. It took an improvement in diagnostic testing, and 21 years, to get a genetically confirmed diagnosis of Limb Girdle Muscular Dystrophy 2A/R1 (thanks to Neurologist Richard Roxburgh) and by that time I already had another daughter. However, it was good to have confirmation that as a recessive condition neither of them would be affected. Having a label for the condition I have has been very comforting and I’ve enjoyed being able to connect with others who can share the same experiences and frustrations. Those early days with young children weren’t easy but we muddled our way through and I’m proud of the independent, strong young women both of my girls have become. Instinctively they knew what Mother needed help with and did things without needing to be asked. I always noticed a difference between them and their friends who were so much more reliant on adult help. Even from a young age they were champions of disability issues. Both were quick to monitor the disability carparks to make sure the cars were displaying the right sticker and were outraged if they were not. In her work as an architect Georgia makes sure that disability access is a key feature in all of her designs. My job at MDA seems to have come full circle as I have recently been appointed as the Member Services Advisor, a similar role to the one I had when this article was written. I enjoy connecting with our members and am hoping to do more to support those who want to connect with others. With many rare disorders you often end up as an expert in your own condition so it’s good to share that knowledge. Using Zoom, we have been able to bring together different groups of members with particular conditions and this is something we will keep expanding on. Our member- centered approach means that we want to provide services that add value in people’s lives, so if there is anything you’d like us to consider please get in touch with me via email denise@mdn.org.nz YOUR CONDITION IN REVIEW Coming across an In Touch magazine from 2000 (see opposite page), Denise Ganley reflects on how much has changed on her motherhood journey but how little has changed with her role at MDANZ. Reflecting 22 years on Top : Denise, Darian Smith and Rachel Woodworth (previous Northern branch fieldworkers). Above : Denise with her daughters Georgia (left) and Olivia. Right : One from the archives – the original story that featured in MDANZ’s In Touch magazine in the year 2000.