Movie night to keep family rolling

FOR the past year, a Bacchus Marsh-based woman has been raising awareness and funds to accommodate for her son’s rare genetic condition.

With a film night set to take place at the Regent later next month, Michelle Ross is aiming to purchase a wheelchair-accessible car for her son Caleb, who in May was diagnosed with an unnamed condition affecting the Neurod2 protein gene.

Having also been diagnosed with ADHD and autism at three years old, Caleb experiences frequent pain and mobility limitations, requiring regular use of a wheelchair.

With his condition worsening, Ms Ross said their need is becoming more and more urgent.

“Over the last few months, he’s gotten a lot worse with his muscle deterioration and pain so he has to use his wheelchair a lot more,” she said.

“We now require an electric wheelchair because he’s getting very frustrated with the manual one and not being independent or control himself.

“The wheelchair will be funded through NDIS but a wheelchair-accessible car won’t be. I’ll obviously need a car that’s got more than two seats and wheelchair access in the back.”

With a modified KIA Carnival in mind, the family will need $55,000 for the vehicle.

Through their GoFundMe page, the family was able to acquire a golden retriever assistance dog called Goldie for Caleb with $10,000, and shifted focus from his training when a car became a greater priority.

Although they’re receiving an electric wheelchair through NDIS, an accessible car is not covered through the scheme.

Caleb currently uses a temporary electric wheelchair, though Ms Ross said the current setup still isn’t ideal.

“It folds up and all that but it weighs about 25, 30 kilos which I’m lifting in and out of the car every day,” she said.

“It’s been better than the manual but it’s not suitable with everything we need. It’s killing me as well to lift it, and it takes up the whole boot of the car.”

Ms Ross has not been able to apply for a loan for the car due to a workplace incident that’s left her on WorkCover for the past four years.

Caleb’s cause will come to Ballarat on Saturday, 27 May with a fundraiser screening of The Little Mermaid at Regent Cinemas.

“We’re going to try to organise a raffle or auction on the day as well,” Ms Ross said.

“We want to make it a fun movie for kids and accessible for everyone that generally wouldn’t be able to take their kids.”

Tickets for the movie night are $20. For more information or to book, contact [email protected].