Oliver is 18 years old
“Oli was 8 years old when he was diagnosed with Myotonic Dystrophy,” says Kim, mother of 18-year-old Oliver.
“My husband, Simon, was diagnosed at the same time and he was about 38 years old. That’s the amazing thing about MD, we had no idea that Simon even had a neuromuscular condition. Simon had played state basketball and been very active throughout his life, whereas Oli has been more restricted in what he can do from a younger age.”
After diagnosis, Kim reached out to MDSA for information, as she had no understanding of the condition or what living with it might look like. “Initially, we went to a Christmas party at MDSA,” says Kim. “We’d lived a very sheltered life before Simon and Oli were diagnosed. We weren’t exposed to disability at all, and so I wanted to find out how the kids would react to people with varying disabilities and children in wheelchairs.”
Since the initial Christmas party event, Oli has been to ten camps with MDSA and the family have been very involved. “It is priceless having five days a year, the kids are looked after by carers who all want to be there. I’ve got four children and they all go with Oli. Oli has always been treated the same as my other three children; he still plays sports and does a lot of activities; he is still mobile but gets very tired.” And he has a lot of medical appointments and therapies.
Oli also goes to the monthly get togethers that MDSA puts on, from bowling to laser skirmish to the movies. Kim enjoys the social inclusion that Oli gets out of it and loves that the parents can go and have a coffee.
“We can talk about things that our other friends just don’t understand,” explains Kim. “Our support for each other is great in the MDSA community.”
Kim also finds that receiving help in navigating the NDIS has been extremely valuable for her, given that the people at MDSA know MD so well and can provide advice on how to best navigate it.
“We joined MDSA because of the client services that were there. If you want to arm yourself with information and make your life easier, you hunt it down and it’s all there for you. The things they provide, like exercise physiologist information sessions, are fantastic. I could attend information sessions to listen and find out what my boy could do; hearing from a speech pathologist was really informative and very relevant to swallowing issues that both Oli and my husband experience, which was great because these guys could learn about their issues with swallowing. It’s just been so valuable for us to have that support and our community network; I don’t know how well we would be navigating MD without it.”