“Cartwheels – I can’t do cartwheels.”
That’s the measure a 9-year-old with a glorious mop of strawberry blond hair, a liberal dusting of freckles, and backbone to burn, puts on her disability… her limitation.
It’s not even that Ellie Jones can’t do cartwheels, which is every little girl’s God-given right, it’s more than other kids can that bugs her. “I can’t do things I want to do, and I want to do all the things that other people can.”
As if to compensate, Ellie’s been gifted with oodles of grit, and, as they say, strength of character determines success more than anything. And if she can’t do cartwheels, you can bet she has tried and will keep trying.
“She just wants to be like everyone,” says mum Alexia Skipper-Jones. “She just wants to be like the other kids. She thinks she is.”
When The Weekend Sun caught up with Ellie she was being like the other kids. She was scrambling up a steep sheep track on a farm adjoining Whakamarama School.
It was the North Cluster Schools Cross Country and there was Ellie – pigtails bobbing furiously, blood pumping, determination cranked up and the telltale, exaggerated gait. “It makes me wobbly,” says Ellie. But she was still competing.
What make’s Ellie wobbly is ataxia – a degenerative disease of the cerebellum; that part of the brain which is responsible for coordinating movement. Ataxia is a type of cerebral palsy so her fine and gross motor skills are compromised. It makes Ellie wobbly but not incapable, wobbly but not unwilling.
“I get happy when I run,” says Ellie. “It makes me feel free and I love the fresh air.” Two kilometres, 20 minutes pounding the paddocks and first place as an AWD – athlete with a disability – a good afternoon’s outing.
And that happened because of adaption and inclusion. When the pack in the Year 5 girls cross country set out Ellie was among them. But then Ellie’s course was adapted – it was shorter to enable her to take part and compete.
Ellie rejoined the pack later in the race and finished about eighth. “She felt part of it, she felt included,” says mum Alexia. And that means everything to a parent. “It’s heart-warming, she is just one of the kids.’
Alexia says she expects adaption and inclusion in all areas of school life. “And when I see or hear it happening of peoples’ own accord, then that’s what’s heartwarming.”
Then in the middle of an intense chat about disability, adaption and inclusion, the little girl in Ellie explodes. The office dogs – Flo and Adie wander through the Sun foyer and make a beeline for Ellie. There are shrieks of delight, sniffing, licking and patting – it’s all a very welcome diversion from the serious grownup stuff.
“I have two dogs,” says Ellie. “Kia Kaha, the schnauzer and Cheva the rescue dog – that’s why they were sniffing me.”
With the ataxia comes a heart condition – an enlarged aorta. Ellie takes daily medication, has regular ECGs and a two-yearly MRI. All this mean life is challenging for a bubbly, chatty and mischievous nine-year-old. But while she has a dicky heart, it’s a big one.
“She’s tough. She’s had so many falls but she just gets up and carries on,” says Alexia. “Other kids fall over and cry like babies.”
Now Ellie is looking to the Halberg Games at Kings College in South Auckland – an annual three-day sports tournament in October which is open to eight to 21-year-olds with a physical or visual impairment. It offers kids a chance to try new sports, pursue sporting goals, compete, make friends and have fun.
Ellie’s been before, competing in the 100 metres, archery and long jump.
In the meantime the family’s focused on Ellie being included, given an opportunity wherever one exists. “Absolutely people are willing to make it happen. It just needs people recognising she has a disability and that she needs inclusion and adaptation.” Ellie will do the rest with relish.
“She’s a happy-go-lucky wee girl for all the adversity she faces. A very happy wee girl.” And a spunky one.