TOUCHED by a little girl’s rare condition which ultimately makes her unable to walk long distances, the community has rallied and raised $15,000 to help her family purchase a wheelchair.
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Evelyne Blencowe, six, was born with a rare condition called Beals Syndrome, a connective tissue disorder affecting all her joints.
While Evie can walk short distances, it doesn’t take long for extreme fatigue to set in, which then requires her to be pushed in a pram.
However, as she is getting older, the pram no longer suffices, so her mum, Louise Blencowe, started a fundraising campaign to assist in raising money for the wheelchair.
It took just two weeks to raise most of the money, which has blown Evie and her family away.
So far Evie’s main problem with her condition has been managing a worsening curvature of her spine.
She wears a brace constantly and has restrictive lung disease as a result of the reduced space in her chest.
And although Evie appears active and desires to be so, she struggles with energy levels and pain.
While the pram has sufficed up until now, Mrs Blencowe said her daughter now needs the wheelchair.
“It will give Evie independence, allow her to rest and enable her aide to move her around the school freely, ”she said.
But the biggest factor against the chair was the cost.
Evie would have been eligible for a government funded chair, but the reality was she was looking at a two-year wait.
So her family set about doing some fundraising, selling handmade goods and planning a wheelchair race.
But this week they were gobsmacked to find the amount has almost been reached thanks to the generosity of Evie’s school, West Bathurst, churches within Bathurst and complete strangers.
Mrs Blencowe said West Bathurst Public School donated $1500, their winnings in a Nova film competition they entered, with their entry focusing on ability.
Other donations came from church groups and strangers, with one person donating $5000 and another $3500 anonymously.
“Everyone has been so amazing,” she said. “The school community has been incredible, that’s part of the reason we love West Bathurst so much, because they are so supportive of children with special needs.”
Mrs Blencowe said the local church community had also been incredibly supportive.
She said it was a relief for Evie to be getting her chair.
“At her age being in a pram was no longer an option. She was being teased by kids, it’s not their fault – they didn’t understand, they just asked questions, it’s only natural,” she said.
“But to have raised the money so quickly, we just can’t believe it and want to thank everyone.”