HELP!

I need a favor, this doesn't really have to do with the Bracelets for Rett organization but i need YOUR help! As family and friends of girls and boys with Rett Syndrome the term "going down without a fight." means SO much to you, right? We'll that is exactly what we are doing here. You see my name is Rachel,  my sisters Kelly, and my best friend is Nathalie. Last year we held a spaghetti dinner for Emma and Rett Syndrome during the spring. This year we were trying to make it an annual event but at a different place. The place we want to have it would be asking for a hundred dollar rent. To pay for this hundred dollar rent we would want to hold a dance in the town's middle school Cafeteria  for the middle schoolers to come to and have a fun night. We would keep a hundred of the proceeds and the rest would go to Girl Power 2 Cure for OUR CURE! 


We went to the middle school principal to ask permission, but. We were denied. We fully understand that it isnt her fault and shes simply telling us the rules. no dances not school related and everything. but really. This little girl attends the elementary school just down the stairs. In 4 short years she will be going to this same school thats denying us the right to HELP HER GET HER VOICE! is that not school related?  We simply want aloud the use of the cafeteria for one friday night. 


We cant get what we need without you though. we are only three teenagers. Without your help we are being deprived the ability to help this little girl and millions like her. We deserve to have our voice be heard while trying to free hers.


How can you help? Comment, share, email braceletsforrett@yahoo.com. ANYTHING. but without youre help we wont recieve the tools we need. and trust me. we arent going down without a fight. 


Nathalie says:


"Please take the time to read this. My name is Nathalie and I'm 13 years old. I am in 8th grade at the Saranac Lake Middle School. I'm not going to talk to you about that though. This letter is about Rett Syndrome. Rett Syndrome is a form of autism that affects girls. It deprives them of walking, talking, and using their hands. Imagine duct tape over your mouth, glueing your hands together, and having both of your legs broken. Try and imagine how aggravated you would feel. On top of this, you would have seizures daily and your spine wouldn't be straight. You wouldn't be able to say if you were hungry, where you wanted to go, or if you were in pain or not. Little girls with Rett Syndrome are completely trapped. 

Kelly and Rachel's little cousin has this awful disease. There's no cure. Poor little Emma goes day by day, trapped in a world where people think she's stupid when she's really more intelligent than practically any other kindergartner out there. Today, Kelly and I went to our principal to ask if we could hold a dance. All of our money from the dance would be donated to the non-profit organization girlpower2cure. Much to our dismay, we were told we are not allowed to have a dance to raise money for research for a cure. I understand this is the school cafeteria we're talking about, but we SERIOUSLY can't use it for a dance? I also understand there are standards for dances, like they have to be school-related. Emma ATTENDS our school! I don't see how that is not school related. All we want to do is raise money for this precious five year old, yet we're not allowed to. I also understand this is not the principals fault. All she is doing is telling us the rules, and doing her job. I don't blame her one bit.
If your little daughter was born with this chromosome mutation you would do everything you can too. Seeing them suffer is not right. If you see this, we want to have a dance. And if you want to learn more about Rett and Emma, go to girlpower2cure.org
Do it for Em."

The R-word...poem style

For English were doing a poetry unit. Its very structured, like a couple nights ago we wrote soapbox poems. Soapbox poems (according to my english teacher) are used when you want to complain about something or get it off your chest when you get really annoyed with something. We had a few requirments for the poems like at least 15 lines and a couple poetic devices but other than that we were pretty much free. So. I wrote about the derogatory use of the term retarded. i also wrote about that on THIS post but its pretty much one of my favorite things to rant about. I didnt really think to much of the poem until we were put in pairs and when the person i was paired with said something along the lines of "Wow. Thats really powerful. You should publish it or something." and i got to thinking where in the world would i publish such a poem until i remembered YOU guys!! so i decided that id publish the poem HERE! so here is the poem:

How would it feel to be degraded, deflated?

To be stupid though smart

or dumb with a big heart?

How would it feel to be an insult to the world?

To be hated for something you cannot control.

After all those years would the hurt take its toll?

What if you couldn't stick up for yourself?

You were trapped in a bubble with the world outside

listening to people make fun of your life.

What if you couldn't shake off the pain

and the word goes around and gets under your skin.

The only justice that's served is the words of your kin

Would you be able to handle the crack of your heart

When you get bullied with that word from finish to start

and they think it means nothing but you no longer feel smart

Your world is like rock bottom with no where to hide

it doesnt mean stupid clueless dumb or scarred

it simply means the monster inside. Its Retard.

The End. 

it still needs some work (be free to suggest changes) but i felt you guys would enjoy this poem because 1) its about a really good topic and 2) i wrote it with our cure in mind. One day when the cure for Rett Syndrome has been found and all these girls (and boys) are living there dreams theyll also be sticking up against this  cause too. but there can only be a cure with your help. buy a bracelet for only FOUR DOLLARS  by emailing braceletsforrett@yahoo.com and share this with your friends! 

To 2012!

I was talking to a friend yesterday and we were talking about 'normal.' What is normal? well, its you're everyday life, the things you do, feel, and say, on a regular basis. normal is NOT something that blends in with everyone else. Normal is not a fantasy world on TV, its YOU.


You're probably wondering why i'm talking about 'normal' and what it has to do with Rett Syndrome, but in a Rett syndrome family its easy to feel abnormal. Trust me, when you're 15 and know all about chromosomes and seizures and special needs galore its really easy to feel out of place in a society obsessed with obtaining perfection.


I should care about hair, makeup, boys, surviving high-school  and popularity, but instead i am here writing to you  about the abnormalness of my normal situation. the fact that i care about Rett more than i care about what people think of me makes me stick out at school like a sore thumb. i'm imediatly labeled abnormal because i don't fit in. but i bet if you looked at the lives of those other kids you would see that they are similar because they don't have the perfect life either. 


NO ONE is abnormal because everyones normal, is normal.


So in 2012 i will help achieve raising awareness to the Syndrome that makes me stand out. i'm going to bring it into EVERYONE'S normal until someday its cured. i'm going to make it so when i type "Rett" into the computer there is no little red line saying i misspelled something. and you can help by simply buying a four dollar bracelet. email braceletsforrett@yahoo.com with your two favorite colors and well get back to you! 2012 is YEAR of the CURE!


"Everybody knows there is no such thing as normal. There is no black-and-white definition of normal. Normal is subjective. There's only a messy, inconsistent, silly, hopeful version of how we feel most at home in our lives." -Tori Spelling