GEORGE Stalley is a little superhero living with Duchenne Muscular Dystrophy.
While the muscle wasting disease affects his entire little body, it hasn’t robbed him of his spirit and ability to find and spread hope and joy.
George’s prognosis will likely see him lose the ability to walk in his early teens, progressing to serious respiratory problems.
His mother, Kathy, said George was born a delightfully happy baby.
He sat independently, but did not progress to crawling or other gross motor skills such as moving from lying to sitting, or pulling up.
He started to walk around 15 months, but was never confident on his own and fell frequently.
After months of physiotherapy, multiple GPs and a long waitlist to see a paediatrician, blood tests confirmed Duchenne muscular dystrophy – a disease that mostly affects boys.
Now aged six, he is full of personality and brings endless magic, laughter, and love to the Stalley family.
“He’s cheeky and full of charm, with a big love for LEGO, cars, and movies,” said Kathy.
“For a five-year-old, he also has some unexpected interests; he’s surprisingly into scary stories and monsters”
George and his little sister visit their grandparents in Corlette regularly, however Duchenne affects every part of his life.
He relies on a wheelchair for stability and to manage fatigue; takes daily steroids to help preserve his muscle strength; and attends multiple therapy sessions including physiotherapy, speech therapy, and occupational therapy.
While there is no cure yet, some treatments are becoming available in the US and Europe.
Duchenne Australia is working to secure access.
Grandparents, Liane and Geoff Stalley, cherish their time with George, especially during his school holiday visits.
“This is when we solve many puzzles, explore new movies or go on adventures like whale watching or visiting animals at the farms, and marine parks.”
Over the past couple of years, they have become increasingly involved in fundraising for the Duchenne community.
They are hosting a High Tea on 14 August from 1.30pm-5pm and a Summer Spritz is planned for February.
People wanting to support their efforts can contact Liane on 0413 703 555, with all funds going to Duchenne Australia.
“We are putting our efforts behind fundraising for Duchenne muscular dystrophy to ensure the research continues.”
Duchenne Australia focuses on raising awareness, supporting research, advocating with relevant bodies, and supporting families and those diagnosed with Duchenne.
Kathy became an active member after George was diagnosed and is now its General Manager.
She will attend this month’s fundraiser along with Tomaree Peninsula mother Jacquie Cooper, whose son Leo is also living with Duchenne.
Kathy hopes they can raise greater awareness of this rare and widely misunderstood childhood disease, which has a life expectancy of around 30 years.
“It’s a heartbreaking and relentless disease, and while there is currently no cure, families are fighting every day for care, for treatment, and for time.”
World Duchenne Day is also coming up on 7 September, a date that represents the 79 exons of the dystrophin gene.
For more information, follow @duchenneaustralia or go to duchenneaustralia.org.
By Jacie WHITFIELD
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