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.
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 if needed (German, French, Spanish, Portuguese, Dutch, Turkish or Russian). 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!
To mark Rare Disease Day 2025 we are sharing the amazing adventures of Selena – an very inspiring young lady with Rett syndrome and her equally wonderful family! Selena's Story 28.2.25Download
Many thanks to Usree and Kalika for sharing this amazing account of their trip across several European countries and India during the monsoon season! It is a such an interesting and inspirational reading but also …
Becky Jenner, President, had the pleasure of meeting Julia Ramlogan a couple of years ago when Julia launched her new organisation to raise awareness and help progress towards a cure. We are delighted to share …
Ever since Rett syndrome stole Angelina's ability to walk, talk and communicate I've asked myself daily, What is she thinking? How is she feeling about this or that? She's always been very expressive and …
Many thanks to Mel Lancaster, USA, for sharing her very honest thoughts on the impact of Rett syndrome for all the family. 'Someone asked me recently, “What is the meaning of all this suffering?” Make …
We are delighted to share another beautiful example of the importance and power of AAC. Ruth is a wonderful young lady from Belgium who enjoys her moments of communication so much! There is not a …
Continuing our Rett Syndrome and AAC Awareness Month campaign, we are honoured to share the experience of Johanna´s family and their journey with joys and challenges in their use of the Tobii device. Please join …
By Usree Bhattacharya It is poignant to me that the only video I have of my little girl, Kalika, speaking by mouth is the one in which she repeats after me: “I. Love. You.” When …
Katharina is now 14 ½ years old and has been epileptic since the age of three. In the beginning, the epileptic seizures manifested themselves at long intervals and were somewhat under control with medication. However, …
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 …
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 …
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 …
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 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 …
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 …
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 …
