Caleb Ross' battles rare Neurod2 genetic disorder

Caleb Ross, 6, is one of eight known cases in the world - according to Australian genetics experts - where production of Neurod2, a protein coding gene in the brain, is disrupted or not present.

The disorder, which does not have a name or prognosis, presents in a similar way to autism and ADHD but with other neurological, behavioural, mobility and physical symptoms.

The Bacchus Marsh boy's condition is sadly worsening and he struggles to walk for a couple of minutes due to extreme pain all the time.

He suffers general muscle weakness, exhibits extreme behaviours and sleeps for about two hours a night. He was diagnosed with autism and ADHD when he was three.

Caleb's mother, Michelle Ross, has been fundraising for a support dog but her fundraising has changed direction because Caleb is currently in need of an electric wheelchair. His manual wheelchair is not meeting his or his family's needs.

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Mrs Ross has applied for funding for an electric wheelchair through the National Disability Insurance Scheme but she said the family required a wheelchair accessible vehicle which was not covered by the NDIS.

Mrs Ross, who has a work injury, has $1000 towards a vehicle.

Weighing 48 kilograms, lifting Caleb in and out of Mrs Ross' current vehicle is taking its toll on her body, along with lifting the 26 kilogram manual wheelchair.

"It's extremely hard. My body is not coping with it. As you can imagine it takes a wear and tear, especially when you are lifting constantly. (A wheelchair accessible vehicle) would just change our lives in such a positive way for Caleb," Mrs Ross said.

"He would be able to be so much more independent which he wants. He wants to be independent. He hates the fact that he can't do this. He gets so frustrated and upset and it just breaks my heart. He sits there and bawls his eyes out because he can't do this, like everyone else, and it just kills me."

Mrs Ross said a wheelchair accessible vehicle would allow Caleb to go to more places, and participate in sport and activities. It would make the regular trips to Melbourne and Ballarat hospitals easier.

"We want him to be included and have a normal life," she said.

Regent Cinemas Ballarat is hosting a movie fundraiser to help the Ross family buy the wheelchair accessible vehicle.

The Little Mermaid will screen on May 27 at 4pm.

To inquire, email Mrs Ross at CalebNeurod2@outlook.com

Caleb's current fundraiser can be viewed at https://www.gofundme.com/f/calebs-rare-condition-fight

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