Emma was born with CHARGE Syndrome which, for her, was non life-threatening. She has extreme abnormalities of the inner ear which affect her hearing and balance. Her hearing loss is complicated and we regularly visit the Royal Institute for Deaf and Blind Children (RIDBC) at North Rocks for services and treatment. Her hearing has dropped to profound and she is now undergoing candidacy for a cochlear implant (she currently wears bone anchored hearing aids) which involves a series of appointments before, during and after surgery.
She has low muscle tone which meant she was in a walking frame until 4.5years of age. Her syndrome also affects her vision (although this is not extreme), and she will most likely require hormone treatment in the next few years. Emma also has a developmental delay for which we see a psychiatrist at CHW for. (Emma with Professor Nunn from CHW below)
We have always driven to Sydney, but the frequency has made it hard as Emma is missing more school and becoming frustrated with the time spent travelling. I am also struggling with the demands of long trips. Given the pending cochlear implant procedure, it would be a tremendous help for us to access flights during this time.