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.

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 info@rettsyndrome.eu . 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!


How AI-Learners Can Help Kids with Rett Syndrome Learn Math
Adele Smolansky is a Guest Blogger and a senior studying Computer Science at Cornell University. She is also a sister to Lara who has Rett Syndrome, and the founder of an educational technology start-up that …
Extraordinary Matteo
I came into the world on an afternoon in May 2018. May, the 1st to be exact. No Labor Day for my parents that year.  After a rough arrival, I extended my stay at the …
Apolline and Education
Hello, my name is Alice Seror. I am the mother of Apolline who is 6 years old. We live in the south of France with her dad and her little brother. What age did your …
Mille’s Secret World: Living with Rett Syndrome
A delightful new video about living with Rett syndrome. Mille and her mum Susanne live in Denmark. Many to them both for sharing their story in such a positive way. Despite the shock and devastation …
Inna´s victory
Inna is 9 years old and lives in France with her family. Her mother, Elsa Delhelle Gasnier, says that since Inna was diagnosed with Rett syndrome, their family schedule got filled with never ending medical …
Hello Camille!
In the second of our Family Focus features, Laetitia and Nicolas from Belgium, share their story about new diagnosis and how meeting a family who were so positive really helped in those early days. ‘Since …
Meet Ann Charlotte…
Ann-Charlotte is 73 years old and lives in Sweden. Many thanks to Ann-Charlotte, her family and Helena Wandin at The National Rett Centre in Sweden for permission to share this story in the first of …
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