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My name’s Anita and this is my daughter Lily. She is four years old. She was born with Pierre Robin sequence. That manifests with low muscle tone, difficulties eating, weak stomach though she is hearing impaired as well.

Can’t pigeon hole what Lily has; she doesn’t fit into the groups of definable Autism, Down syndrome, Cerebral Palsy. She has other things that some children with her congenital disorder have and some don’t.

By the time we got to the NDIS we were looking down the barrel of getting a personal loan, which we weren’t even sure that we would get. It was quite dire.

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