Fairy tale endings

Once upon a time there was a little girl. She loved to run, jump, swing, but her favorite activity was talking. She had words in her vocabulary with no definitions, talked non-stop, and was constantly shouting out demands to her mom “Bring me this! Do that!”.

Wait.

Stop.

Is that how it really is?

Its more like this:

Once upon a time there was a little girl. She was confined to a chair because of legs that didnt work. She liked to watch the other kids and loved when they made her feel included but it wasant enough. She talked with her eyes but her mouth didnt work. She couldnt help cry sometimes because all she wanted was to be out of her body.

Sounds more like it.

I have a challenge for you all.

Duct tape your hands together and sit on them. Tie your legs together and dont use them whatever you do. Put tape over your mouth. Dont say a word. Now have someone push you into a room filled with people having lovely conversations. But you cant say anything. You cant make any guestures to show theem how you feel. Now have someone put something you love infront of you. Just sitting there, but you cant touch it, you cant even reach for it. Now along with all that youre spine slowly curves, you have seizures, every hill seems like a mountain.

Frustrating right?

This is how girls with Rett Syndrome live. Every day. Every hour. Every second. Can you imagine?

Now imagine living your life like this then suddenly: you can walk. You get to go anywhere you please by yourself. You can talk. You no longer sit in and listen to the conversations around you, youre PART of them. Youre perfectly healthy, seizure-free, and have conquered the war of your past life.

This is what Their lives could be like when we get a cure.

So help free these girls from their bodies. Help turn this fairytale into reality.

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