Writers of the Rett World
“I never thought of myself as a “typical” girl growing up; I really wasn’t. Even at fourteen, when most people seem to have found a rhythm that lets them glide through hallways and classrooms, I was always a little out of step. Not in a bad way, just… different. Tuned to my own uniqueness. I see that clearly now, writing from the far side of the two decades that separate me from that fourteen-year-old girl.
Mum used to say I was born with a body that was like a borrowed tone, bringing the song to life if left to vibrate long enough.”
Thus begins ‘The Sound of Things Unsaid,’ a story by César García Torres about, as Torres puts it, the possibilities that could open up for people living with Rett syndrome as genetic medicines move closer to reality.
The story, available on Substack, aims to raise funds for Reverse Rett through storytelling. And as we started talking about it, we realised just how many writers there are in the Rett community. So, we wanted to shout out a few of our favourites.
You can read more of The Sound of Things Unsaid here
So first we want to talk about ‘Your Sister Talks with her Eyes,’ a story by Michael Petitti, which helps children ‘understand disability, empathy, and the powerful bond between siblings.’
Here’s a little more info on that:
“When one sister is born unable to talk, walk, or use her hands the way others do, her younger sister has questions.
Why is she different?
What does she think?
Can she understand me?”
You can pick up a copy of “Your sister talks with her eyes” here
Going back to Substack, another we love is Rhiannon Louden’s, which explores “Raw, honest perspective on motherhood, disability parenting and female entrepreneurship.”
Here’s the start of a post we loved, about Mother’s Day: I remember so vividly those moments just before my first daughter was born:
Screaming in pain as the midwife told me she could see her head, feeling panicked and terrified and shouting that I couldn’t do it. And then I did do it- the hardest thing I’ve ever had to do- and this perfect little human being was placed on my chest in the most emotional moment of my life.
I remember crying “she’s here” and being in absolute amazement of the magic of that moment and the reality of what my body and I had just done.
I remember those amazing firsts: a baby napping on my chest, the first time she grabbed my finger, watching my husband connect with our new baby and learn to be a father in front of my eyes.”
You can read “The Rare Mum chronicles” here
Next we want to talk about Mark Reily’s book, ‘The Lives of Reilly.’
Drawing on the themes of positivity, determination, and hope, The Lives of Reilly takes you from the football pitch to the consultancy room to the desert, reinforcing the power of positive thinking in pushing limits and achieving goals. Touching, poignant, and funny, Mavis’s story is proof that even in the darkest times, light can be found, and the seemingly unachievable can be conquered.
You can pick up The Lives of Reilly here
But we can’t talk about stories about Rett without talking about ‘Patience,’ the 2021 novel by Victoria Scott, sister to Claire.
Here’s the blurb:
A new high-risk treatment gives you the chance to cure your child’s disease. Do you take it? The Willows have been through a lot. Louise has devoted her life to caring for her disabled youngest daughter. Pete works abroad, almost never seeing his loved ones. And their eldest, Eliza, is burdened by all the secrets she’s trying to keep from her overloaded family.
Meanwhile, Patience observes the world while trapped in her own body. She laughs, she cries, she has opinions and knows what she wants. But those who love her most – and make every decision about her life – will never know.
Or will they? When the Willows are offered the opportunity for Patience to take part in a new gene therapy trial to cure her Rett syndrome, they face an impossible dilemma. Are the very real risks worth the chance of the reward, no matter how small?
Pick up a copy of Patience today.
And last, but by no means least, let’s talk about ‘Rare: A Memoir’ by Rachael Stevenson who you might know as the co-founder and CEO of a little charity called Reverse Rett.
“For parents like me, there are two distinct parts to life. Before, when kid problems are about coughs and colds or chicken pox. Your Saturday being broken up by another child’s party. Filling out the reading records, making sure they have some semblance of a clean PE kit on Tuesdays. And then there is after, where you will wake up every day in perpetuity making choices between the least worst options just to make sure they stay alive. But first someone has to believe you when you say something is wrong.”
You can read Rare: A Memoir here