Caroline Lily’s Journey: Emma

Thursday, November 15, 2012

Emma

I have no words. Many tears have been shed this week.

My dear friend Beth lost her precious daughter Emma to complications from Rett Syndrome.

Emma, you are one of the bravest, most determined people I've ever known. You have touched our lives forever. We love you and miss you so much.

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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.