My daughter Millie was just three when she was diagnosed with Rett Syndrome in 2024 — and now we’re running a marathon to help change her future.

Millie is almost five, an age when most children are chatting away, running, playing and exploring the world — but she can’t yet walk or talk, and instead of playdates and racing around the garden, her days are filled with physiotherapy, occupational therapy and speech therapy, all helping her work towards milestones many children reach without even thinking about them. And yet, despite all of this, Millie faces every challenge with determination, resilience, a spirit that inspires us daily and the most beautiful smile!

Rett Syndrome affects so many parts of everyday life — it can take away a child’s ability to walk, talk or use their hands easily, turning simple things most of us take for granted into daily challenges. Reverse Rett is a lifeline for families like ours. They don’t just fund vital research and clinical trials working toward treatments and a cure — they also provide guidance, resources and a supportive community for parents navigating life with Rett Syndrome. Their work is helping drive real scientific progress while making sure families never feel alone on this journey.

For the first time ever, gene therapies designed to treat the root cause of Rett Syndrome are now in advanced clinical trials, with early results showing encouraging improvements in areas like movement and communication. Real progress is happening and continued funding could help bring life-changing treatments closer for children like Millie.

We don’t know what the future will look like for Millie, but what we do know is that she deserves every chance possible.

Thank you so much for taking the time to read our story and for any support you can give — it truly means the world to our family.