The parents of a girl born with a rare genetic disorder likely to prevent her from ever walking, talking and possibly even learning to use a toilet have pleaded for financial assistance to help them access a miracle cure.
Sydney parents Tatyana Leonov, 38, and Evan Dickson, 40, need financial assistance to help their daughter Millie access a trial for life-changing gene therapy that is not available in Australia.
Millie, now 15 months old, recently received a heart-breaking diagnosis of Angelman Syndrome, in which one of the mother's gene's is missing, preventing the production of key proteins.
The disorder is sometimes known as 'smiling syndrome', because the sufferers appear to laugh or smile for not apparent reason.
But the happy face can hide severe developmental problems that last a lifetime.
The parents of a girl born with a rare genetic disorder likely to prevent her from ever walking, talking and possibly even learning to use a toilet have pleaded for financial assistance to help them access a miracle cure (pictured, mum Tatyana Leonov with Millie)
Millie during testing, with her mum Tatyana Leonov. Her parents hope new gene therapy will transform little Millie's future
When Millie started missing 'milestones' that parents normally celebrate - such as sitting up around six months, the couple began to worry.
Ms Leonov's father, a retired GP, suggested they genetic testing for Millie, just in case.
'We honestly didn't expect anything like this. Or anything at all,' said Ms Leonov.
'She just wasn't sitting up when other kids were and wasn't babbling, but now she's much further behind her peers.'
Children and adults with Angelman Syndrome live with severe intellectual disability, speech impairment, debilitating seizures and they do not develop the way other people do.
For instance it is rare for children with Angelman Syndrome to be learn to use the toilet.
'From the moment we found out about the diagnosis, it felt like we'd stopped
