Calling out for community help

By Lachlan Ellis

Caleb Ross is a lively, energetic kid, but a rare genetic disease has his family in need of a wheelchair accessible vehicle, which the NDIS won’t yet fund.

The six-year-old from Bacchus Marsh is one of just eight known cases of NEUROD2, a condition which causes epileptic seizures and leaves Caleb in terrible pain after walking for just a few minutes.

Caleb’s mum Michelle says having a wheelchair-accessible car would improve Caleb’s quality of life dramatically – but the NDIS won’t fund the electric wheelchair also needed, until the family buys a new car.

“We’ve spent a fair bit of time in hospital this year; Caleb spent a week in the Royal Children’s a couple of weeks ago, then had surgery on the 26th of March. We’re just in and out constantly unfortunately, it’s been an absolute nightmare…he has to take eight different medications a day now,” Ms Ross told the Moorabool News.

“Having the wheelchair and the accessible vehicle would improve Caleb’s life so much. He’ll be able to be more independent and happy – he just so frustrated now, because he can’t be independent and wants to be. Lifting his manual wheelchair in and out of my car, I keep slipping discs…it weighs about 25 kilos.”

The new car will cost just over $50,000 – a significant obstacle that has forced Ms Ross to reach out to the community for assistance, as a workplace injury means she’s unable to get a loan.

“We’ve got the wheelchair, but we need the wheelchair-accessible vehicle for NDIS to pay for the wheelchair. They’re not willing to pay for it until we’ve got the wheelchair-accessible vehicle, and my car can’t be modified unfortunately, it’s too small. NDIS said they’ll pay for the modifications for a Kia Carnival…but they’ll only do it for cars that are under three years old, under a certain number of kilometres, or brand new,” she said.

“I went to apply for loans for the car, but unfortunately because I’m on WorkCover, no-one’s legally allowed to lend me money. It’s just ridiculous, I feel like I’m hitting brick walls everywhere I turn. We’re at our last resort…I’ve checked with every organisation in Australia, I’ve contacted MPs, to see if there’s anywhere we can get help with wheelchair-accessible vehicles, but nowhere helps unfortunately.”

Regent Cinemas in Ballarat has gotten on-board to help raise funds, with a screening of The Little Mermaid at 4 pm on 27 May arranged to raise some money for the new car.

“It’s been amazing to have someone actually respond to us, we’ve been trying to get anyone to help us and any ideas for fundraising. They actually contacted us and said they’d happily throw a fundraising movie event…we’re hoping to sell as many tickets possible, and do a raffle on the day. They’ve been really supportive,” Ms Ross said.

Tickets to the movie screening are just $20 each. For enquiries, email [email protected].

You can also donate to Caleb’s GoFundMe page at gofund.me/dbdc7ffa.