Jack is 12 years old
When Jack, aged 12, was first diagnosed with Duchenne Muscular Dystrophy, he was just two and a half years old and his family was living in Port Lincoln. “We had just had this heart-wrenching diagnosis, but there was only a small community hospital in Port Lincoln and services were limited,” says Jack’s mum, Michelle. “The doctors said to us, ‘He’ll be lucky if he reaches his 21st birthday’.
“At that time, it was like a whirlwind; we felt out of breath and couldn’t catch ourselves. That’s when MDSA flew over to Port Lincoln to help me and my husband Martin. They spoke to us about Jack’s diagnosis and helped us to digest what the diagnosis would mean for him in the future.”
“We are so lucky MDSA did that for us and continued to support us afterwards,” says Michelle. “At the time, we were often flying over to Adelaide to visit eight different specialists at the Women’s and Children’s Hospital and stay overnight for five nights or so. MDSA made arrangements so that we could stay in their accommodation for $30 a night, which was such a relief. It was a hard time for us but staying with MDSA meant we were able to meet the staff and it was a really smooth transition into the MDSA community.”
Thanks to the support that Michelle, Martin and Jack have received from MDSA, they become a part of the community and met other families going through similar things.
“We wanted to meet a family with an older boy; we didn’t know what an adult with MD looked like. We didn’t know if Jack would be able to swallow, to think, to go to the toilet. MDSA connected us in with a family to talk to and helped me to be brave. Then we met an adult with MD and realised that people with the condition are normal in a lot of ways. MDSA gave us that opportunity to be a part of something and they connected us in with people I needed at the time.”
In 2009, the family moved from Port Lincoln to live in Adelaide, to be closer to the services that Jack needed. Michelle credits MDSA with providing a social outlet for Jack and allowing him to feel included in a new city.
“Jack has no siblings and goes to a special school, so his friends were made through camp and wheelchair sports. Pretty much every social thing that Jack does is linked back to the MDSA, including getting wheelchair sports up and running, which has been amazing for him.”
A health professional herself, Michelle recognises that education and connection are vital when families receive a diagnosis like Jack’s. “There are two things that MDSA does that are the most valuable for families. The first thing is the connection with other members in the MD community; it’s knowing you’re not alone and that there are other families out there. It’s also about knowing that you can comfort families with younger children, and answer those difficult questions for them, pass on the knowledge and help other people; most of the information that parents get is through MDSA the families they are able to connect us with.”
“The second thing is being able to ask sensitive questions that you might feel embarrassed about; MDSA provides a go-to point for its members. You can ask questions around palliative care or sexual health, and that kind of thing. It’s important for families to remember not to go on the internet; go to real people for information and allow them to link you in with others. There is false information out there that can frighten people. My advice to parents going through something similar is don’t scare yourself. Talk to people who are educated and get linked to the right people through an organisation like MDSA.”