MADDY Parker can only sit at a desk for 30 minutes before she needs a break from math sums or essay writing.
For her sister Kayla, school work is even more of a battle – she only lasts 15.
But it’s nothing to do with their academic smarts. Rather, the simple act of typing, holding a pen or even sitting can cause a domino effect of painful dislocations in their fingers, wrists, arms and hips, and all the way down their spines.
The girls suffer a crippling condition which causes a revolving door of breaks and dislocations from every day actions like walking, sleeping and getting dressed.
But a glance at their report cards give no indication of their struggles with a severe form of Ehlers Danlos Syndrome, a rare connective tissue disorder which makes their joints loose and affects one in 20,000 people.
They’ve taken months off school in their short lives but are streets ahead of most of their peers – with Maddy, 14, even enrolled in accelerated learning programs.
“They’ve found other ways to compensate, they are not able to excel in sport so they are blitzing their studies,” says their dad Simon.
“Speech recognition technology on their computers has been a big help, and their schools are very helpful with things like giving them extra time in exams and letting them stretch out their homework over a number of nights.”
From the time they were born, the girls have been wrapped in cotton wool.
They’ve been patched up and strapped by physios more times than the average AFL team, and chronic pain is their constant companion.
When Maddy wakes up, she runs through a mental check list of all her joints to check everything is in place.
But life is beginning to change, thanks to the dedication, passion and perseverance of a physiotherapist at Sunshine Hospital.
Paediatric orthopaedic physiotherapist Sam Wills has tailored a treatment plan to suit their needs, and it’s paying dividends.
Four years ago, Maddy struggled to walk the circumference of her school grounds – and was having 20 to 30 dislocations a day.
Now, she suffers about 10-20 a week and has kissed goodbye to her wheelchair.
Likewise, Kayla, 11, who suffers a more severe form, was spending 50 per cent of her time in a wheelchair two years ago, and barely attending school.
Now, she still dislocates her fingers and knees daily – but can walk for 20 minutes, swim for 2km, and is winning 200m races at sports carnivals.
The girls couldn’t be more grateful to Sam, who set them on a course of light exercise, swimming and pilates to build up their strength.
“I was a bit of a wreck before I came to Sam, he’s like my backbone,” says Maddy.
“We went to so many physios who would say it was all in my head, there was no such thing (as EDS). But he kept looking outside the square.
“He’s been helping build up the muscles around our joints in order to help us walk, and have more control of our hands, which is making everyday life and tasks a little easier.”
Maddy now spends up to four days at school a week, meaning she doesn’t miss out on important school work and seeing friends.
But the bubbly brunette has never let the disorder beat her.
At the age of 9, the tenacious teen became the unofficial poster girl of ED after penning an emotional “letter to the world” in her bid to raise awareness.
Her fight for a cure caught the attention of the media and politicians, and she’s met two Prime Ministers, two Premiers, Melbourne’s Lord Mayor and Victoria’s Governor-General.
Her impressive list of awards includes the Child of Courage in News Corp’s Pride of Australia gongs, a State Government Young Achiever Award and the City of Melton’s Youth Citizen of the Year.
In recent times, she’s pulled back on campaigning to concentrate on her studies, and is hopes another sufferer will step up and fill the breach.
“I feel like more people at least know what it is now, we used to go to doctors and they’d look at you blankly,” she says.
“Now, if I break or dislocate something, they have a better idea how to treat it.”
In an unlucky roll of the dice, both parents have mild versions of the syndrome, but were only diagnosed when it presented in acute form in their children.
Mum Kathy says she and her husband had always just assumed they were accident-prone.
“We were diagnosed at the same time as the girls, based on our genes, but we never had it to the same extent,” she says.
Paediatric orthopaedic physiotherapist Sam Wills praises the bravery of Maddy and Kayla as “incredible”.
He says he had never heard of EDS until he met the sisters. Now, he has eight sufferers on his books, sent to him through word of mouth and referrals.
He buried his head in research to find the best way to treat them, and says the stronger and fitter they are the better.
But their improvement is testament to their personal strength and dedication, he says.
“A lot of kids will whinge and cry when they are in pain, but they just shake it off and don’t complain,” he says.
“They say ‘Yeah it hurts, but we are very used to it’.
“You know they are in a lot of pain when they say they are. They don’t see themselves as victims, they just do the best they can.”
The Greatest Need Project is an online story-sharing website with two major goals – to help patients facing significant hardship and disadvantage, and to facilitate research, at Western Health.
As patients, the Parker sisters are sharing their story in bid to help those at Western Health who need it most.
By making a donation on Maddy and Kayla’s behalf – and sharing their story on social media – you are making a difference too. Thank you.