Now here is some girl power in this photo. You have heard us speak about the Daltons many times. They are really such an amazing family. Rachel (on the right) is 14. She is using the power of words in her family's fight against Rett Syndrome. Her younger cousin Emma (in her arms) has Rett Syndrome.
Rachel has been making and selling bracelets to raise money for research. I came across her "Note to the Monster" on her blog yesterday. The power of her words is so strong.
Rachel, thank you.
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A Note to the Monster
To the monster- the mayhem- that's hit our family like a tornado hits a little Kansas town.
to the evil-the horrible- that thinks it can get our spirits down. well FYI? it doesn't work.
to you rett syndrome, yes you.
while you bring us wheelchairs and hospitals and worries galore you also bring us a strength we never thought possible. when you bring is seizures and sleepless nights and tears beyond the norm you also bring us a bond so tight nothing can come between it.
to you rett syndrome.
the robber who takes the muscles of the little girl. you think you'll break us this time with the chair and the wheels but you haven't. try again.
the thief who stole her words. you think were in your trap with the nonverbal pain and unexplained sadness but you don't. well just keep fighting.
to the selfish one who gives her seizures and pain just to watch her struggle to eat, drink, breathe. live. I dare you to sit there and watch as we fight for her. because you're just adding fuel to the fire my dear rett syndrome. and that's a bad idea.
we are a family that fights together.
a love that never ends.
a strength that doesn't give up.
a hope that doesn't stop. not ever.
Not even when our dreams are shattered like glass.
Or our when our worst fears are coming true.
so I dare you to sit there and watch while we work to rid of you. to end the struggles and suffering. not only for our little girl but for the thousands of others out there. ao that next time she can look in the face of another child and say 'i got through the bad and I know you will too'.
so that some day shell have a chance to run though sprinklers or yell at her mom. so that shell have a chance one day to let her guard down. to stop being strong.
you just wait rett syndrome because a day will come when those scientists look at you with a sparkle in their eye and say "take THAT you horrible disease!". someday someone will receive a diagnosis of rett syndrome for their daughter and breathe a sigh if relief because you will be the disease with a cure.
and as for those girls you've caused pain and suffering? they'll become advocates for the others in their situation. they'll hold seminars and tell everyone of the horrors you caused them to be trapped in their bodies. you'll become extinct and never cause another innocent girl any pain. Ever.
I guarantee that someday you rett syndrome wont even have a grip on those scissors youve been using to cut chromosomes.
so take that rett syndrome because after everything weve been though were still glowing with hope like the sun.
you won't take her. break her.
you won't shake us or shame us because the tables turned rett syndrome.
we. have you beat.
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