By time we made the decision to sell everything in Australia and move to the US to get medical treatment for our daughter, almost six months had passed from first noticing an issue with her development at the age of 16 months.
First to see a primary care doctor, then a referral with a six week wait to see a pediatrician; another six week wait to see an ophthalmologist; yet another six week wait to see a neurologist, followed by a week long stay at the Royal Children’s Hospital in Melbourne, Australia where they performed a CAT scan and a series of tests.
Nothing was discovered, and being told that an MRI (with a three month wait) was the next step, we finally gave up, sold everything and moved to the US.Our daughter had gone from seemingly having trouble with her eyes (nystagmus) to losing the ability to walk in that period. We couldn’t delay any longer.
She passed away at the age of four; her disorder was so rare that nobody in Australia, the US, or Europe had been able to provide a diagnosis.
