A bit about us…my name is Sarah, and I live in Brisbane with Jonathan and our two kids Frank, 4 and Evie, 11. We have been accused of being poultry fanciers, and at times fringers. That’s because wherever we live we tend to bunker down a bit. We’ve always been quite happy with that, but things changed quite a bit when Evie came along, and we had to lift our game and get a bit more involved.
That’s not hard to do in West End, which is a diverse and friendly sort of a place and we have met some really lovely people through her local school community. So she’s been good for us, and it turns out that this connection with our community has also been good for her little brother Frankie.
Being a child with Angelman Syndrome (AS), and having a significant disability, he is in need of some help to connect with people. Not long after he returned home from hospital, after sustaining brain damage from a seizure, Evie made this video. She showed it to her grade 4 class.
Then, our wonderful friends and family offered to help us fundraise for a seizure assistance dog or Smart Pup, which became Let’s be Frank. It all kind of snowballed and we figured that this musical bonanza might attract some attention, and any opportunity to raise awareness around a rare condition like Angelman Syndrome was extremely welcome.
So, although his big night is well and truly over, I hope that this blog and my other blabs might help you to understand a bit about AS. What it’s like to be a family with special needs, and how you might be able to help Frankie, and others like him, to make the most of what can be a pretty tough gig.
I never thought I would find myself blogging about anything. However, for some reason it feels good to write about our life with Frankie, and the idea appeals much more to me than talking about it.