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Home / Lifestyle

Custom trike helps girl with 'hole in heart' keep up with all the kids

Bay of Plenty Times
9 Oct, 2015 12:26 AM3 mins to read

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Mobile: Ellie Jones, 7, with her new customised trike, which the Halberg Disability Sport Foundation funded. Photo / Supplied

Mobile: Ellie Jones, 7, with her new customised trike, which the Halberg Disability Sport Foundation funded. Photo / Supplied

Ellie Jones has spent the past few years trying to keep up with others around her - now she can, with her new trike.

The 7-year-old suffers from ataxic cerebral palsy and a heart condition, which her mum Alexia Skipper-Jones describes as a hole in her heart.

Ellie was recently given a grant by the Halberg Disability Sport Foundation, which her family used to get her a customised trike worth $2500.

"My bike is purple, it's really cool," Ellie said from her vacation in Wellington.

The trike meant she could now join in more with others when they were out on their bikes and not miss out on fun, said Mrs Skipper-Jones.

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"Ellie loves riding her bike with her brother Thomas along the waterfront from Fergusson Park to Kulim Park. She gets excited about ringing the bell to warn people she is coming. Her new trike has three gears, it's fast, so she has that competitive spirit and is always wanting to race her brother."

The trike was a big surprise for Ellie, she said.

"She said, 'Wow, is that for me? I can't wait to go over the bumps with my new shocks, just like a mountain bike'."

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Ellie's condition meant she struggled with all fine and gross motor skills, lack of co-ordination and balance, she said.

"So everyday things like stairs, in and out doorways and playgrounds are a challenge - just everything you take for granted, really."

Mrs Skipper-Jones said although her eldest child was very outgoing she struggled with routine activities and it was an ongoing challenge to make life as inclusive as possible for her.

"She wants to do everything that everybody else is doing. At the moment the kids are running around and she is always 10 yards behind them. Then they are on and off the tramp and she can't do that, I've got to put her on the tramp and then off the tramp."

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Mrs Skipper-Jones said they were grateful for the funding from Halberg, the Brain Injured Children's Trust, and Brian Gilbert from New Zealand Trikes, who designed the model for Ellie.

The trike was the real deal and would last her into her early teens, she said.

Mrs Skipper-Jones said Ellie loved running, swimming and had always wanted to compete in the Weet-Bix Kids TRYathlon since she started school.

"She is really outdoorsy and sporty. When she was 5 she played ripper rugby with the kids, and hockey but since she has got older and the kids have got older the gap has got wider, so we have to be very careful in managing what she does. We are building towards her ambition to compete in the triathlon one day.

"Ellie is fortunate to come from a passionate sporting family, the kids will always be given an opportunity to give anything a go."

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