MADDISON and Kayla Parker are determined to be heard this month.
The Caroline Springs sisters are speaking out to publicise Ehlers-Danlos syndrome (EDS), a disability they both have.
Frustrated by a lack of recognition during last year’s official awareness month, the sisters have organised a range of activities in Melton this year.
Maddison, 10, and Kayla, 7, want to tell people about the syndrome, which affects joints and muscle strength and causes chronic pain and easily damaged, bruised skin.
Mum Kathy Parker says the girls organised a flag-raising ceremony at Caroline Springs library and a trivia night at Melton Community Hall on May 24.
They’ve even talked their dad into getting an EDS tattoo.
“They designed an EDS flag and the Melton mayor will raise it with the girls and fly it for the month at Caroline Springs library,” Mrs Parker said.
“Every weekend they’ll have a stall at different shopping centres, where they will sell keyrings, wristbands and things like that.”
Mrs Parker says the girls spend 60 per cent of each day in a wheelchair.
The sisters say they will keep raising awareness of the disability until there is an EDS clinic in Melbourne.
For more details about the trivia night, email kathy.parker@me.com
