Just a few
Resources
Explore resources, support networks, and stories from families and caregivers navigating life with Rett syndrome—because no one should face this journey alone.
Have a Look at some
Book Recommendations
Discover books that offer guidance, insight, and personal stories. Whether you’re a parent, caregiver, sibling, or advocate, these reads can provide knowledge, comfort, and support.
Out of my Mind
Highly recommended. Great eye opening read about a non-verbal girl with CP and how she perseveres through the limitations others put on her.
Everything Happens
for a Reason
This book helped me not feel so alone in facing difficult circumstances, when the carpet got pulled out from under me.
Ghost Boy
Hard, hopeful and insightful to find out what life can be like for a person who’s non-verbal. (If you’re a parent, I don’t recommend reading this until a bit later after diagnosis. If you’re a friend or extended family member then I highly recommend it.)
Disability Visibility
I loved the varied perspectives of first person experiences living with disability.
My Body is not a Prayer Request
Disability justice in the church. Every church pastor, leader and member should read this! I was challenged, enlightened and also laughed at her Top Ten lists.
The Gift
This book massively helped me deal with the battle I fight in my own mind to overcome challenges.
FOR HELPING SOMEONE
With Rett Syndrome
Find practical tips, resources, and support to help care for someone with Rett syndrome because every act of understanding and compassion makes a difference.
Tobii Dynavox
Eye Gaze Speech Generating Device. Scarlett received hers at 3.5years old: total game changer for communication!
Read about our journey into AAC here.
CELA Member Library
A public library service for individuals with print disabilities. Scarlett uses this to be able to read text in a larger font size and also have audiobooks read to her while text is highlighted. She looooooves reading.
Rett University
E-learning platform for Rett Syndrome. I’ve found many of their courses helpful over the years.
Girl Power 2 Cure
Non-profit organization raising awareness, education and research. Their goal is to help eradicate the disorder through research targeted donor outreach.
Have a Look at some
Movie Recommendations
some support
For Caregivers
Ontario Caregivers
Support & resources for caregivers in Ontario.
Brene Brown: Vulnerability Ted Talk
Helped me come to terms with feeling it all.
FaceBook groups
Ontario Rett Family Group
Rett Syndrome Family Support Forum - large global network