Email - news@themooraboolnews.com.au
News
The Moorabool News – 2 August, 2022 Page 3
A smile to melt your heart By Lachlan Ellis He is bubbly, and an energetic 5-year-old, but a rare genetic disorder has his family and doctors unsure of the road ahead. Earlier this year, Caleb Ross was diagnosed with NEUROD2 (short for neurogenic differentiation factor 2) – just 1 of 8 children in the world, and the only person in Australia with the disorder, which causes epileptic seizures and means Caleb can only walk for a few minutes before he is in agonising pain. Only last Friday Caleb met the Premier of Victoria Dan Andrews at Maddingley Park for an announcement of $1.25 million for an all-abilities playground to be built at the Bacchus Marsh Racecourse Recreation Reserve. Caleb’s family has been working with Syndromes Without a Name (SWAN), but with so few people affected, there is little knowledge out there about NEUROD2. Caleb’s mum Michelle said he had been diagnosed with autism and ADHD at three years of age, but she knew there was more going on with her son.
“Caleb got genetic testing done a couple of years ago. He's been having problems since he was 4 months old…Caleb's had many tests and MRIs, but they always showed normal results,” Ms Ross told the Moorabool News. “This year we got genetic tests back showing Caleb has NEUROD2…it’s good to know that we’re not going crazy and there is something there, but it’s really hard not knowing the answers to how this will affect Caleb, and what his future looks like.” With the amount of pain Caleb is regularly in, Ms Ross said the family “haven’t slept a full night since he was born”. Caleb is a foundation student at St Bernard’s Primary School in Bacchus Marsh. An ongoing fundraiser for Caleb has allowed the family to buy him a therapy dog, but it still needs to be trained, which will require more money as the family has used up the funds provided by the National Disability Insurance Scheme (NDIS) to look after Caleb. To donate and help make Caleb’s fight against NEUROD2 a little easier, head to www. gofundme.com/f/calebs-rare-condition-fight.
Caleb Ross is the only person in Australia with NEUROD2; one of eight in the world. Photo – Helen Tatchell
Advertisement