Just who is Molly?
Molly Kate is our beautiful four year old daughter & sister. As Molly reached six months of age we noticed she wasn't meeting her developmental milestones. Together with her paediatrician, we started investigating a cause. After a harrowing six months Molly was diagnosed with Angelman Syndrome - this was shortly after her first birthday.
Understandably this was devastating for everyone in Molly's life. On the flipside a diagnosis was a relief after a long, tenacious search for answers.
We remind ourselves daily that Angelman Syndrome is something Molly has, and not who she is.
Why another website?
Three years into our journey we are still new to this world. It is without a doubt a marathon, not a sprint. However, it is now the life we know and we dive into it head first.
Since Mollys diagnosis the Queensland Angelman Association has a website, the Foundation for Angelman Syndrome Therapeutics Australia has been launched and there have been three sucessful walks marking International Rare Disease Day. Through networks of inspirational parents and families, slowly but surely change is happening. Almost thirty five thousand visits to this website have created a fantastic platform for Angelman Syndrome awareness.
We hope by continuing to share the knowledge we gain through our experiences we can help others who find themselves asking the same questions and searching for the same answers.
By viewing this website, and passing it on to friends and colleagues, you help to create a voice for Molly.
Thankyou,
Rohan, Meagan, Eva & of course Molly!
"Just because a person may act, get around, look, dance, smile, read, learn, show what she knows, or communicate differently just means they are different - not deficient!" - the least dangerous assumption