Approximately 1 in 500 Australians lives with an incurable genetic neuromuscular condition that progressively deteriorates their muscle strength and function, known as muscular dystrophy.
This condition is something that ten-year-old Fletcher and his family have been living with since he was diagnosed at just 18 months old.
“My condition, which is Congenital Muscular Dystrophy, affects every muscle in my body. It makes my arms and legs, in particular, feel very tired and weak, which means I can’t hit my big brother as much as I’d like to,” Fletcher jokes.
“I can walk short distances, but I use my powerchair to help me most of the time, especially at places like the park or school. My chair gives me the ability to keep up and hang out with my friends, which is important to me.”
29-year-old, Farah, has also been deeply impacted by Muscular Dystrophy. Her younger brother Zak passed away from Duchenne Muscular Dystrophy when he was just 16 years old and her mother, Joeanne lives with manifesting carriers disorder of the same condition, requiring full-time use of a wheelchair.
“The level of knowledge and awareness in the medical field for boys with Duchenne is far more accessible and known than it is for women with the condition because fewer women are impacted by it. However, both need so much more research, understanding and awareness surrounding the disease,” says Farah.
“It took doctors nearly 40 years to diagnose my mum from the symptoms she was presenting with, even though she experienced some of the same symptoms as my brother from childhood, however less severe and at a slower progression.”
“After Zak passed away, I became involved in Sugar Free September to raise awareness about Duchenne Muscular Dystrophy and to support other men, women and families impacted by the disease,” said Farah.
This September, Fletcher and Farah are calling on people to support Sugar Free September and cut out refined and added sugar for one month to help shine a light on rare neuromuscular conditions and raise vital funds to help others like them.
MDNSW’s Chief Executive Officer, Charlotte Sangster, said the impact of COVID-19 has made it a tough couple of years for Australians and hopes that Sugar Free September provides the opportunity for people to do something positive for themselves, and for others.
“Most of us are unaware of just how much sugar we are consuming on a daily basis. Did you know that on average, Australians consume 14-16 teaspoons of added sugar each day? That’s equivalent to almost 3 bars of chocolate,” she said.
“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 live their best lives,” Sangster concluded.
