Well, a bit about us…my name is Sarah, and I live in Brisbane with Jonathan and our two kids Frank, 4 and Evie, 10. 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 change quite a bit when you have kids. When Evie came along 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.
This video was made by Evie and shown to her grade 4 class. She also held a Q&A session on AS, which apparently went down a treat with her classmates. Since then I have had a lot of interest in Frankie from the kids at school. It got me thinking about ways to try to normalize things for Evie, and to help her prepare for the inevitable challenges ahead.
She has kind of set the tone with her video and inspired me to talk more about it.
Also, our awesome friends (old and new) offered to help us fundraise for Frankie’s Smart Pup, which kind of snowballed. We figured that this musical bonanza might attract some attention, and any opportunity to raise awareness around a rare condition like Angelman Syndrome is extremely welcome.
I hope this blog will give you an idea of what we’re on about, as well as help you to understand AS, and how you might be able to help Frankie and others like him to make the most of what is a pretty tough gig.
I never thought I would find myself blogging about anything. However, the idea appeals much more to me than blabbing about it. So bear with me and my grammar, I will give it a go…