Briella Shannon, 4.5, Rett Syndrome
How would you explain Rett Syndrome to a child?
Rett Syndrome affects all of my movements and the way I communicate. I am able to walk, but I get tired easily and I need someone to watch out for me at all times so I don’t fall. I mainly use my eyes to tell others what I want or need, but I also sometimes will use my hands. I need help from someone to do just about everything that you can do by yourself (like eating, playing, and using the potty).
What would you want the world to know about Rett Syndrome?
I would want the world to know that although having Rett Syndrome may change my actions, it does not change the way I think or feel. My opinions and feelings matter just like yours. And although I may not be able to talk back to you the way that you talk to me, I still understand what you are saying so please keep talking to me!
What does it feel like to live with Rett Syndrome?
With Rett Syndrome I sometimes feel trapped and frustrated because there are things I want to do and/or say, but my body won’t let me. Soon I will have my very own eye gaze communication device or “talker” though so that will make my frustrations a lot less!
What brings you joy?
My joy comes from being around others (especially my loved ones), eating my favorite foods and snacks, watching my favorite show (Word Party), car rides and being outside when the weather is nice.