By Lachlan Ellis<\/p>\n
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\u2019t yet fund.<\/p>\n
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.<\/p>\n
Caleb\u2019s mum Michelle says having a wheelchair-accessible car would improve Caleb\u2019s quality of life dramatically \u2013 but the NDIS won\u2019t fund the electric wheelchair also needed, until the family buys a new car.<\/p>\n
\u201cWe\u2019ve spent a fair bit of time in hospital this year; Caleb spent a week in the Royal Children\u2019s a couple of weeks ago, then had surgery on the 26th of March. We\u2019re just in and out constantly unfortunately, it\u2019s been an absolute nightmare\u2026he has to take eight different medications a day now,\u201d Ms Ross told the Moorabool News.<\/p>\n
\u201cHaving the wheelchair and the accessible vehicle would improve Caleb\u2019s life so much. He\u2019ll be able to be more independent and happy \u2013 he just so frustrated now, because he can\u2019t be independent and wants to be. Lifting his manual wheelchair in and out of my car, I keep slipping discs\u2026it weighs about 25 kilos.\u201d<\/p>\n
The new car will cost just over $50,000 \u2013 a significant obstacle that has forced Ms Ross to reach out to the community for assistance, as a workplace injury means she\u2019s unable to get a loan.<\/p>\n
\u201cWe\u2019ve got the wheelchair, but we need the wheelchair-accessible vehicle for NDIS to pay for the wheelchair. They\u2019re not willing to pay for it until we\u2019ve got the wheelchair-accessible vehicle, and my car can\u2019t be modified unfortunately, it\u2019s too small. NDIS said they\u2019ll pay for the modifications for a Kia Carnival\u2026but they\u2019ll only do it for cars that are under three years old, under a certain number of kilometres, or brand new,\u201d she said.<\/p>\n
\u201cI went to apply for loans for the car, but unfortunately because I\u2019m on WorkCover, no-one\u2019s legally allowed to lend me money. It\u2019s just ridiculous, I feel like I\u2019m hitting brick walls everywhere I turn. We\u2019re at our last resort\u2026I\u2019ve checked with every organisation in Australia, I\u2019ve contacted MPs, to see if there\u2019s anywhere we can get help with wheelchair-accessible vehicles, but nowhere helps unfortunately.\u201d<\/p>\n
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.<\/p>\n
\u201cIt\u2019s been amazing to have someone actually respond to us, we\u2019ve been trying to get anyone to help us and any ideas for fundraising. They actually contacted us and said they\u2019d happily throw a fundraising movie event\u2026we\u2019re hoping to sell as many tickets possible, and do a raffle on the day. They\u2019ve been really supportive,\u201d Ms Ross said.<\/p>\n
Tickets to the movie screening are just $20 each. For enquiries, email calebneurod2@outlook.com.<\/p>\n
You can also donate to Caleb\u2019s GoFundMe page at gofund.me\/dbdc7ffa.<\/p>\n","protected":false},"excerpt":{"rendered":"
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\u2019t 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 […]<\/p>\n