Today we reflect on the 12 years that we’ve had Rett syndrome as a part of our family, and the impact it will have on our family as Elle moves into adulthood. From the moment we received Elle’s diagnosis, we felt a mix of uncertainty and determination. Each milestone reached was a testament to Elle’s strength, but as she has grown older, the transition to adult services has loomed ahead like an uncharted territory.

This will be a year of transition for Elle – transition from pediatric services to the adult world, as she will be 18 in September.  This transition is a profound journey filled with challenges, growth, and hope, as we learn to navigate this important milestone.  Emotionally, this transition is bittersweet. While we are excited about the opportunities ahead, this transition is also terrifying.

This journey of transition is not just about accessing services; but it is also about fostering independence, resilience, and hope for her future. As we take this next step, we are reminded of Elle’s strength and the endless possibilities that lie ahead for her.  Looking to the future, we envision a world where Elle can live her best life and find fulfillment with whatever she will be doing.

There continues to be so much development as it relates to Rett syndrome research and several clinical trials happening.  It was just 2 weeks ago that Acadia Pharmaceuticals announced that Health Canada’s approval of DAYBUE (trofinetide) for the treatment of Rett syndrome.  While we know that this won’t be a choice for everyone, we are very excited about the possibilities for the Rett Syndrome community. 

Our Ref4Rett initiative was developed to raise awareness and funds for Rett Syndrome research and we are so grateful to all of those who have continued to support us in our journey.  We remain committed to our mission to raise awareness and funds for Rett Syndrome research.  If you are interested in supporting Rett Syndrome research in Canada, donations can be made to the Ontario Rett Syndrome Association at https://www.rett.ca/donate/ or on our website at https://ref4rett.com .   Show your support and help to raise awareness by wearing purple or lighting it up purple on October 29^th – Rett Syndrome Awareness Day.