10/26/2025
Today we write this post as we mark the 13th anniversary of Rett Syndrome in our lives. As many of you know, after several years of uncertainty, Elle was diagnosed with Rett Syndrome just after she turned 5 years old, and since that day our lives have never quite been the same.
Parenting a child with Rett Syndrome has been one of the most profound journeys of our lives. It has been a journey filled with love, resilience, and joy—but also with quiet challenges that many never see. The sleepless nights, the endless appointments, the advocacy, the moments of uncertainty, and the worries for the future have all been and continue to be a part of our path. And while there is beauty in the journey, there is also a loneliness that grows heavier with time.
When your child is young, offers of help often come more readily. As she has grown, those offers have lessened, and the isolation can feel sharper. The older she becomes, the more invisible the struggles for us, as parents, sometimes feel. No one sees the constant weight that we carry, or the impact on us individually and as a couple. Why? Because Elle’s spirit radiates, and her strength continues to inspire us every single day to put our bravest foot forward, and a constant reminder of what it means to truly persevere and love unconditionally.
For many years, we have shared pieces of her story; to raise awareness, to celebrate milestones, and to show the world the extraordinarily beautiful person that Elle is. Those posts have been filled with our pride, but also with the vulnerability of letting the world into such a personal part of our lives. Sharing has been a way of connecting, of easing the loneliness, and of letting her light reach others.
Now that Elle has reached adulthood, we want to honor her privacy and dignity in the same way we would with any adult. Moving forward, our updates will be fewer and more private. Her story is hers to hold, and we will respect that as she steps into this new chapter of life.
We are deeply grateful for the support and love so many of you have shown along the way. And as we look to the future, we carry hope: hope for continued progress, for joy in small and big moments, for strength in the hard days, and for a community that continues to see and value Elle - and others like her - for exactly who she is. 💜
If you are interested in learning more about our journey or to make a donation you can visit our website www.ref4rett.com. To learn more about Rett syndrome and O.R.S.A., you can visit www.rett.ca .
