Family Focus

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.

July 2021 – New Diagnosis – How old was your child? Did it take long to get the diagnosis? What problems did you encounter? How did you feel when it was confirmed? What support could you access? What are your main worries now?
August 2021 – 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?
September 2021 – 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?

If you would like to contribute a story to be shared here, please email info@rettsyndrome.org no later than 15th of a corresponding month. Please try to keep it around up to 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 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!


Meet Ann Charlotte…
Ann-Charlotte is 73 years old and lives in Sweden. Many thanks to …
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