Ava has Rett syndrome, a rare genetic disorder that leaves her unable to speak or walk and she needs help with moving and eating. She is a regular 11 year-old girl on the inside who hears, sees and understands everything, but Ava can’t communicate because she is trapped in her body that won’t work properly.
How do you say you want jam and not vegemite on your toast, that your favourite colour is pink not purple or tell your big sister that you don’t want to be an embarrassment and just want to hang out with her like sisters do?
Ava has a disability, but she is also strong, feisty and funny, and as the narrator of the story she gives us an insight into the challenges of every day life with Rett syndrome as well as the challenges it can also bring to a family.
One day I’ll talk like Aimee.
One day I’ll find a way.
Thanks to the encouragement of her new friend, Aimee and the determination and problem solving of Kieran, her occupational therapist, it is Ava’s eyes that provide the key for her to be heard at last. You are going to be cheering Ava on alongside her family when she communicates with them for the first time!
I didn’t know about Rett Syndrome until I read this book. Samantha Wheeler has written this story with so much heart and understanding because her own daughter Charlotte was diagnosed with Rett Syndrome when she was fourteen.
If you enjoy books that give you an opportunity to walk in somebody else’s footsteps and experience a life that is different to yours then Everything I’ve Never Said is a perfect choice.
“Everyone has something to say, whether they communicate in a conventional way or not. We just need empathy and understanding” (Samantha Wheeler)