Gaby's Story: Living With Rett

Rett Syndrome Research Trust

I am flying home from New York for the Hope for Hannah and Gaby Gala, a fundraiser that raises awareness and research funds to find a cure for Rett Syndrome, a neurological disorder that causes seizures, anxiety, breathing problems, orthopedic issues, and loss of speech in hundreds of thousands of girls. Four books in my bag vie for my attention, but all of them lose to a file saved to my laptop: "Gaby's blog post."

When I open the document, I find the speech my cousin delivered this time last year, one she spent hours typing one letter at a time in order to give a voice to all the girls with Rett who are silenced. It begins with an excerpt from a speech Gaby wrote four years earlier, expressing what it feels like to have a remarkably intelligent mind trapped inside an unresponsive body.

Reflecting on her words, Gaby stops and clarifies:

This might sound like a damsel in distress type of situation. But what I want to share with everybody is a secret I have learned about girls with Rett: there is actually a warrior woman inside each one of us. We go into battle every single day from the moment we wake up; we fight to be understood, we fight for our voices and we fight for our independence. Girls with Rett are courageous, unwavering, determined and strong.

It isn't easy to stand before hundreds of people and tell your story, especially when it's filled with hardships that lie beyond your control. Gaby does it year after year, adding new chapters that teach us how she overcomes the obstacles she faces every day.

As I read the latest chapter, what strikes me most is the command she demonstrates in shaping the narrative. Gaby refuses to let any single event or circumstance define her; she lays her experience bare and decides for herself what it means to be a girl with Rett. Her message is loud and clear: it means she is a warrior.

Gaby is also a cousin, a sister, a daughter, a friend. For those of us lucky enough to be a part of her family, she touches our hearts and our lives each and every day. This Thursday, she will do the same for all of us and so many more, sharing her story once again with all who stop to listen and leading all who will follow into the battle against Rett. I hope you'll join me in standing right by Gaby's side.