By Lachlan Ellis<\/p>\n
He is bubbly, and an energetic 5-year-old, but a rare genetic disorder has his family and doctors unsure of the road ahead.<\/p>\n
Earlier this year, Caleb Ross was diagnosed with NEUROD2 (short for neurogenic differentiation factor 2) \u2013 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.<\/p>\n
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.<\/p>\n
Caleb\u2019s family has been working with Syndromes Without a Name (SWAN), but with so few people affected, there is little knowledge out there about NEUROD2.<\/p>\n
Caleb\u2019s 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.<\/p>\n
\u201cCaleb got genetic testing done a couple of years ago. He’s been having problems since he was 4 months old\u2026Caleb’s had many tests and MRIs, but they always showed normal results,\u201d Ms Ross told the Moorabool News.<\/p>\n
\u201cThis year we got genetic tests back showing Caleb has NEUROD2\u2026it\u2019s good to know that we\u2019re not going crazy and there is something there, but it\u2019s really hard not knowing the answers to how this will affect Caleb, and what his future looks like.\u201d<\/p>\n
With the amount of pain Caleb is regularly in, Ms Ross said the family \u201chaven\u2019t slept a full night since he was born\u201d.<\/p>\n
Caleb is a foundation student at St Bernard\u2019s Primary School in Bacchus Marsh.<\/p>\n
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.<\/p>\n
To donate and help make Caleb\u2019s fight against NEUROD2 a little easier, head to www.gofundme.com\/f\/calebs-rare-condition-fight.<\/p>\n","protected":false},"excerpt":{"rendered":"
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) \u2013 just 1 of 8 children in the world, and the only person in Australia […]<\/p>\n