By NATALIE GALLENTI
PARKWOOD Green Primary School was a sea of black and white last week but there was not a Collingwood player in sight.
The Hillside school hosted a fundraising event for two of its very special students Maddison and Kayla Parker who both suffer from the rare disease Ehlers-Danlos Syndrome.
EDS is a group of inherited connective tissue disorders caused by a defect in an individual’s collagen. It leads to increased elasticity within skin, joints, muscles, ligaments, blood vessels and organs. The severity of the disease can vary from mild to life-threatening and there is no cure, with treatment supportive at best.
The event was organised only months after Maddison wrote her “letter to the world” in which she called on the community to unite and find a cure for the little known disease that affects thousands across the globe.
Students, staff and parents wore black and white in a symbolic gesture, with the zebra representing EDS. The police band performed to a captivated audience and Western Bulldogs players Dale Morris and Jack Redpath presented Maddison, a keen doggies supporter, with a signed jumper.
Mayor Kathy Majdlik also attended the event and commended the sisters on their courage and applauded Maddison’s determination to find a cure for the disease.
The girls’ proud mother Kathy said she was overcome when she saw the effort both students and staff had made on the day.
“It was awesome…the girls were overwhelmed,” she said.
Kathy said students had even written letters to Maddison and Kayla describing them as “an inspiration”.
“Now they don’t feel different because everyone understands EDS. I can drop them off and everyone understands what it’s all about.
“She’s (Maddison) got a lot of drive. We sit back and can’t believe what she’s achieved.”
Homewares giant Salt and Pepper also got involved in the day, contributing zebra-striped piggy banks which are being sold by the school.
While 10-year-old Maddison, whose fighting spirit is now well-known throughout the wider community, spent her pocket money on creating black and white wristbands for students and staff.
And the young warrior said it was all worth it.
“I certainly didn’t expect it. It was amazing and makes me feel really good that the kids want to help,” Maddison said.
“The best part of the day is everyone realising we have EDS.”
Maddison has vowed to continue her campaign to raise awareness and hopes there will one day be a day dedicated to the disease. She also hopes to raise enough funds for a clinic devoted to connective tissue disorders.
The inspirational youngster may well be on her way with more than 1000 likes on her Facebook page already.
Maddison’s Facebook page can be found at www.facebook.com/MaddysEhlersDanlosSyndromeLetterToTheWorld
