Caroline Lily’s Journey: Meet Caroline

Every morning, Caroline wakes happy and smiling, often babbling and laughing at the animals in her bed. Caroline enjoys music, reading, and lunch dates. Her favorites include Sesame Street and Yo Gabba Gabba songs. Although Caroline struggles with chewing and swallowing, she is a foodie and has never been to a restaurant she didn’t like! She also looks forward to trips to the grocery store or Target, giggling and smiling as she rides in the shopping cart and learns the names and colors of the different things she sees.

Caroline entered the public school system in September 2012. She has wonderful and dedicated teachers and therapists at her new preschool, where she benefits from an individualized education program while also receiving various therapies.

Caroline adores her family and friends and melts our hearts with her affection. Even at her tender age, Caroline is already teaching us profound lessons about love and hope, and overcoming challenges.

Caroline with Kroeber, 19 months (Aug 2011)

Caroline's first 16 months in pictures (Jan 2010-May 2011)

About Caroline Lily

Caroline was born in January 2010. She is a bright and sweet little girl with a great sense of humor. She is a bit shy at first, but she loves to make new friends.

Rett Syndrome prevents Caroline from expressing herself and moving the way she wants to. The disorder, however, doesn't affect Caroline's intelligence or her ability to love. She is an affectionate and sweet little girl. She says so much with her eyes, and is very observant and engaged. She understands everything we say to her, even though she struggles to communicate back to us.

Caroline is not to be defined by her missed milestones, but by her strength and sweet spirit.

What is Rett Syndrome?

Rett Syndrome (RTT) is a rare and debilitating neurodevelopmental disorder that mainly affects girls and robs them of their ability to use their hands, talk, and walk. Girls with RTT develop normally for the first 6-18 months before they lose these skills and begin repetitive hand movements such as wringing, clapping, or mouthing. RTT also often brings a wide range of serious medical complications including issues with chewing and swallowing, seizures, abnormal breathing, as well as gastro-instestinal and heart problems.