A bit about us…my name is Sarah, and I live in Brisbane with Jonathan and our two kids Frank, 9 and Evie, 16. We have been accused of being poultry fanciers, and at times fringers. We tend to bunker down a bit, and have always been quite happy with that, but things changed quite a bit when Evie came along. We had to lift our game and get a bit more involved.
a href=”http://www.lets-be-frank.com/wp-content/uploads/2016/05/IMG_1949-e1507700631125.jpg”> Evie in Frankie’s bed[
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 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 generate some understanding around 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.
