We are a community and family is our base unit. We want to pay tribute to all the Rett families who fight Rett challenges every day. Here we will be sharing stories from families across Europe about their experiences of life with Rett syndrome. We hope you will find them inspiring, heart warming and moving. We also hope you will feel you are not alone in dealing with the challenges that this devastating disorder presents everyday. Together we are stronger.
We would like to give the stories a focus each month. We have given the topics below with some suggestions about what you might like to cover in your story but feel free to include what you think will be helpful and interesting to other families.
Early Childhood/Regression What age did your child regress? What skills did they loose? How long did the regression last? What support could you access? What did you find the most helpful during this period?
Education – What age did your child go to school? Do they go to a mainstream school or a special school? What therapies do they get at school? What would you change about school if you could?
Respite and Short Breaks – Do you get a break from caring? How long for? Where does your son/daughter go? How often? What difference does this make to the family?
If you would like to contribute a story to be shared here, please email email@example.com . Please try to keep it around 1 page or 400 words, English is preferable but we can translate some languages (German, French, Spanish, Portuguese, Dutch, Turkish or Russian) if that is a problem. Please also send us up to 3 horizontal photos in high resolution that fit with the story. Please make sure you have permission from whoever is in the photo before sharing it with us as it will be used on the web site and on our social media platforms.
Thank you and we look forward to receiving your stories!