Long-time campaigner Maddison Parker continues to amaze the community as she fights to raise awareness of Ehlers-Danlos Syndrome.
The Caroline Springs resident and her sister Kayla, who also has EDS, are spending the month of May spreading information about the rare connective tissue disorder which affects elasticity within skin, muscles, ligaments, blood vessels and organs.
Maddison, 11, launched EDS Awareness Month last Thursday, joining Melton councillors to raise an EDS flag at the council offices in Caroline Springs.
It will be a busy month for Maddison, who will speak to medical professionals across Melbourne.
“I’ll be … explaining what EDS is about and how to deal with children who have it,” she said.
“We may be rare, but that doesn’t mean we don’t matter.”
A finalist in this year’s Victorian Young Achiever Awards, Maddison will also post a blog on the Royal Children’s Hospital website.
She has vowed to keep campaigning for better EDS services. “I want a [specialised] clinic and won’t stop until we get one,” she said.
