With over 300 million people worldwide affected by rare diseases, today is about raising awareness, supporting research, and fostering inclusivity.
For me, this isn’t just a statistic it’s personal. My daughter, Dotty, has KCNB1, a rare genetic condition that affects her development. She doesn’t speak, but she expresses herself in so many ways through laughter, gestures, and her boundless energy.
Traveling the world with Dotty has been incredibly rewarding for us and her, think she’s on to country 15 now and she will have seen Machu Picchu by this time next week and in a few more weeks we will be in Japan expanding her horizons every day!
As we travel we have seen firsthand how different countries approach accessibility and inclusion some making life easier with thoughtful design and understanding, while others still have a long way to go. These experiences have reinforced how small changes clearer communication, sensory-friendly spaces, and a bit of patience can make a huge difference.
So today, I encourage everyone to take a moment to learn, listen, and advocate. Let’s build a world where no one feels invisible.
If anyone wants to chat about this drop a comment below or email me from the about page.
