MADDISON Parker believes she has a date with destiny – and the Prime Minister.
The young warrior who has spent the last six months campaigning for increased awareness of Ehlers-Danlos Syndrome is ready to take the next step and start a genuine crusade to see a connective tissue clinic established in Melbourne – and her efforts have not gone unnoticed by the PM.
Maddison believes she will need only “five minutes” with Julia Gillard to convince her that establishing such a clinic is imperative to the health and wellbeing of sufferers of connective tissue diseases, in particular those with EDS.
A spokesperson for the Prime Minister told Star Ms Gillard has expressed admiration for Maddison’s strength and support for her endeavour to raise community awareness of such a rare disease.
The spokesperson said there is still a lot that is unknown about EDS but some of Australia’s best minds are working hard to better understand the disorder, with the Prime Minister paying close attention to research developments of connective tissue disorders and Maddison’s efforts.
“Young Australians with drive and determination, such as Maddison, have the ability to truly change community perceptions and instigate change in our society,” the PM’s spokesperson said.
The 10-year-old Caroline Springs resident and her younger sister Kayla are among thousands of people who live with the rare disease which puts them through extreme pain every day.
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 brave Parkwood Green Primary student has to contend with braces on her legs and now wears silver ring splints to stop her fingers from hyperextending. But it’s the constant pain she witnesses on the face of her sister that has made Maddy even more determined to meet the PM.
“It’s really upsetting seeing Kayla (in so much pain) … it makes me even more determined,” she said.
“If I do meet her she will be able to see what I go through and put a face to the name.”
Proud mother Kathy said her daughter has already achieved outstanding success in raising awareness of the disease, including an “exciting” letter from the Prime Minister, but Maddison described it as “a small step towards my goal”.
Maddy’s list of achievements continue to grow with a recent nomination by Melton City Council mayor Kathy Majdlik in the Harcourts Leadership and Innovation awards.
