July 11, 2022 Patient Story

A Beautiful Journey with Lucy: Living With Rett Syndrome

At 14 years old, Lucy is like many teens: She loves her mom’s veggie stir-fry and ski trips with her family and has had crushes on cute boys. Rett has not stopped her or her family from pursuing new experiences and possibilities. Their journey is one of hope.

All good things in life require balance, says Lucy’s dad, Matthew, in telling the story of Lucy and their family on Sharing Rett, a community for shared stories, lessons, experiences and memories that tell the story of Rett syndrome.

Lucy was diagnosed with Rett syndrome, a rare genetic disorder that leads to problems with movement, coordination and communication, at a young age. Some days, life could be overwhelming for the family – two brothers and mom and dad – whose mountain home inspired hiking, skiing and other outdoor activities, hobbies they didn’t think Lucy would ever be able to enjoy.

Group of individuals holding candles.

“I’ve learned that if we’re willing to find a way, she’s always willing to go. These experiences have brought our family closer and given my sons a deeper connection with their sister.”

Matthew, Lucy’s dad

Beyond the bonds they’ve strengthened as a family, their community has also embraced Lucy and come to know her as a person with beliefs, hopes and dreams. Her desire to be baptized was realized and celebrated. She goes to the movies with friends. She experiences adventures as a teenager loves to do.

But in connecting with other parents of Rett daughters, they learned to replace limitations with possibilities. They began hiking together, adapting a backpack to enable Lucy to summit mountains and hike to the floor of the Grand Canyon. “If we had given up and never taken her up that mountain, we wouldn’t have known all that she, and we, could do,” Matthew writes in his story.

“Whether it’s climbing to the top of a mountain or taking time to sit in the grass and watch the trees move in the wind, balancing the moments big and small make this journey together a beautiful one indeed.”

Matthew, Lucy’s dad

The lessons shared by other Rett families have resonated with Lucy’s family. They’ve learned how to move forward with all that is possible and how to slow down and enjoy simple quiet moments. Powerful, hopeful lessons inform the unique journey that is theirs.

Read more at SharingRett.com.

Woman on roller skates pushing a child in a wheelchair.