Caroline Springs sisters Maddison and Kayla Parker both suffer from Ehlers-Danlos Syndrome and live in constant pain. 87059 Picture: MATHEW LYNN
By NATALIE GALLENTI
MADDISON Parker is determined to change the world – and the young warrior might just do it.
The brave nine-year-old suffers from Ehlers-Danlos Syndrome a rare disease that leaves her, her sister Kayla, and thousands of other sufferers, in 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.
When Maddison was diagnosed with EDS at the age of six, her mother Kathy was almost relieved.
She had known something was wrong with her daughter for years and with the onset of kindergarten and school, Kathy realised Maddison just couldn’t keep up with her peers.
“The doctors were testing her for all types of cancers, and then they thought it was arthritis” Kathy recalled.
She was even told the pain was in her head.
“She had really bad headaches, she would pull her hair, she had constant joint pain, everything would ache. Sometimes she would just lie on the floor and couldn’t get up.”
Then her little joints began to dislocate. Even something as simple as putting on a jacket would leave her elbows out of their socket.
“When we finally got the diagnosis we were pretty much told to hope for the best.”
The couple’s second child came along and EDS hit the family again.
“Kayla just struggles with everything, it’s not unlike her to say it’s just too hard. That’s pretty hard to hear from a seven-year-old.”
She’s even been described as a little ragdoll by doctors.
Both sisters wear braces on their legs and have learnt to put dislocated joints back in place. The simple act of walking can dislocate their ankles, while writing poses further dislocations.
They have been welcomed by the community at Parkwood Green Primary School. Their mother admits the pair has always been encouraged to put on a brave face.
“For me it’s not an option to have them sit on the sidelines, I want them to get out there and live life.
“We can’t predict what’s going to happen next week, let alone the next five years. So we live minute by minute, what they did this morning they may not be able to do in the afternoon.”
And it seems Maddison has her mother’s determination. She recently wrote a letter “to the world” in a bid to raise awareness of the genetic disease which affects one in 20,000 people.
In her letter Maddison called on people to open their eyes and see the struggle EDS sufferers face every day.
So far her Facebook page has 500 likes and even the Prime Minister has taken time out to write the resolute youngster a letter.
Kathy said there’s no stopping her.
“She at least wants an awareness day and she said if there’s only one cure in the world she would give it to her sister.”
