Approximately 1 in 1,000 Australians live with a genetic neuromuscular condition that progressively deteriorates their muscle strength and function. There is no known cure, and it can affect people at different stages of their lives, from birth to adulthood. This condition is something that five-year-old George knows far too much about, as he’s been living with it since he was born.
George’s father, Nathan, tells us about their family’s journey and shines a light on what life is like for George living with this rare genetic condition.
“When George was born it was clear that something was not right, he was very floppy, half of his face wasn’t working, his arm was not working and he had to go straight into special care because his breathing was so fast,” Nathan explains.
“We initially put it down to a traumatic delivery but after many tests and months of waiting, a genetic test diagnosed George with a neuromuscular condition called Nemaline Myopathy; a condition that impacts all the skeletal muscles, making them very weak and causing him great difficulty with moving, breathing and swallowing.”
“Because George’s condition was so rare, my wife and I didn’t know where to turn for help. Connecting with Muscular Dystrophy NSW (MDNSW) put us in touch with a tribe of others who knew exactly what we were going through. The community are so generous, not only with their advice but in their actions, with one family even sending George an old power wheelchair so he could get involved in Powerchair Football.”
“Today, George’s weeks are full of appointments with amazing therapists and regular trips to Westmead Children’s Hospital to be reviewed by specialists. He continues to work hard to keep his muscles moving, recently achieving the milestone of being able to get up from the floor unassisted for the first time.”
“We want to give back to the MDNSW community and raise awareness about neuromuscular conditions with a much wider audience, and that’s why we’re participating in Sugar Free September,” Nathan said.
Sugar Free September is asking Australians to cut out refined and added sugar for one month and raise much-needed awareness and funds to help support people living with Muscular Dystrophy.
MDNSW’s Chief Executive Officer, Charlotte Sangster, said the impact of COVID-19 has made it a tough year for Australians and hopes that Sugar Free September provides the opportunity for people to do something positive for themselves, and for others.
“Australians consume an average of 14-16 teaspoons of added sugar each day. That’s equivalent to almost 3 bars of chocolate every day,” Ms Sangster said.
“Most of us are unaware of just how much sugar we are actually consuming on a daily basis, and with the impact of COVID-19 lockdowns, we may have been eating a bit more than normal and exercising less.
“Sugar Free September is your chance to challenge yourself, improve your health and give “sweet” opportunities to kids and adults living with neuromuscular conditions so they can build strength and reach their potential,” Ms Sangster concluded.
All funds raised going towards MDNSW’s programs and services that include camps, retreats and online peer support programs. So, get involved and go #SugarFreeforMD.
Visit www.sugarfreeseptember.org.au for more details and to register.