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Ava Lilly -

Ava was delivered pre term at 27 weeks due to a perinatal stroke and septicaemia. It was quite touch and go for both of us in the first 24hrs but were so well looked after we both survived. Ava was taken to Royal North shore NICU where she spent 13 weeks being cared for till she reached full term and we could bring her home. She then underwent testing a westmead kids hospital and we discovered she was profoundly deaf in her right ear and moderately hearing impaired in her left. As well as a condition called auditory nueropathy spectrum disorder. She had cochlear implant surgery when she was 3. At 1yr old ava wasn't meeting her milestones and was diagnosed with spastic, dystonic quadriplegic cerebral palsy. She received her first wheelchair 3.5yrs because she is super independent and wanted to get around on her own. 2.5yrs ago avas bone structure starting to deform which has left her atm with a severe scoliosis, a 50% dislocated hip and damaged knee joints which means she is no longer able to bend her legs or sit up unassisted. She will undergo spinal fusion next year and then a care plan will be made for her hip and knees from there.