Christmas: Dalton style

theres a saying ive heard out on the rett net. it goes something like this "With Rett Syndrome, nothing is ever normal" and that includes Christmas. Every year we spend Christmas Eve at my grandparents all together discussing where Santa is, the giant nameless present under the tree, sledding, all those 'typical' things but in an untypical way. Of course its always done with lots of giggles:

cause what little girl doesnt like an early present?  Now if only she could tell us what she thinks with words.

we spent like 2 hours trying to get some good family pictures resulting in some good ones:

now i just wish she could make one of those crazy faces. 

but in the end Rett Syndrome didnt get us, in fact Em actually opened one of her own presents!

but theres still the lingering thoughts of the untypicalness of our Christmas celebrations. and i hope one day we can celebrate Christmas without worrying about meds or seizures. and with your help, one day we WILL! there are tons of girls around the world suffering from Rett Syndrome. Tons of families going through the same thing. with the purchase of a Bracelet from bracelets for rett you could help get a 'normal' Christmas for millions of familes. just email braceletsforrett@yahoo.com to get your own! 

Next Christmas

every year its the same thing. maybe next year shell take those first steps, maybe next year shell say I love you, maybe next year shell be seizure free.


but its next year and were still ripping the paper for her, the movements are still uncontrolable, and there is no cure.

so when is the last year? when do we get the perfect christmas? the one without the special chair, the one she gets to do things herself. why cant we have that?

Because of Rett Syndrome.

But next christmas there will be. We will have our cure. With YOUR help.all it takes is ONE bracelet for only FOUR dollars. so order today because research is getting closer and closer to the CURE for Rett Syndrome. 

next christmas shell open those presents, shell knock ornaments off the tree on PURPOSE instead of involentarily, next christmas there will be a cure.but its next year and im still waiting for her to walk over and climb in my lap, still waiting on the love, still watching those seizures.

The Holiday Spirit

just HAD to share this! theres a boy that sits at my lunch table, hes the quiet do homework all period kinda guy. Today something completely unexpected happened though. Today after chemistry this boy came up to me and said "Guess what?!" so i said "what?" kind of weary of what he was going to say. then he said "I got my whole church to pray for youre little cousin Emma yesterday!" 


i was so touched by his small little action and i honestly didnt know how to thank him enough. All day everyday i go around thinking about how people dont care enough about special needs or cancer and stuff but his small gesture changed the way i look at him and some of the people in my school. He proved to me that not all the guys in my school are completly obnoxious and that some people are more than what they seem. So thank you, for making these last couple days of school before christmas break a little more bright.

Change.

Do you have one thing that whenever you see it, you smile?
One dress that when you put it on you cant help smile at your reflection?
For me that one thing is one song by one AMAZING artist (whom i absolutly adore and can sing every verse to every song of hers) named Taylor Swift. The song? Change.

let me start off saying that i have taught myself this song on guitar and now im learning it on the piano and its given me a lot of respect for TSwift because it is NOT an easy song. Ive probably learned more than 70% of TSwifts songs on guitar but for some reason when i first heard it this one got to me. Lets disect it, shall we?

Verse 1:

 And it’s a sad picture, the final blow hits you

Somebody else gets what you wanted again and
You know it’s all the same, another time and place
Repeating history and you’re getting sick of it
But I believe in whatever you do
And I’ll do anything to see it through

now instantly i was just hit with wow thats my life. Some moments im fine and then i realize something little and its just like..wow..

and the 'repeating history and youre getting sick of it'? Last night Rett Syndrome took a young lady only 20 years old. A while ago the monster gave wings to TWO girls on the same exact day. only 16 and 30. Tonight there is a girl only 15(?not positive) that is fighting for ONE more day to stay with her family. its a pattern. its 'repeating history' and I for one am getting sick of it. BUT i still believe in the cure. and im going to do everything i can to see it.

Verse 2:

Because these things will change
Can you feel it now?
These walls that they put up to hold us back will fall down
This revolution, the time will come
For us to finally win
And we’ll sing hallelujah, we’ll sing hallelujah

because the cure is near. and I KNOW IT! someday the 'walls of all their bodies will fall down the reveal the girls trapped in there for so long. i promise you. and when it does there will be MORE than a celebration. 

Verse 3:

So we’ve been outnumbered
Raided and now cornered
It’s hard to fight when the fight ain’t fair
We’re getting stronger now
Find things they never found
They might be bigger
But we’re faster and never scared
You can walk away, say we don’t need this
But there’s something in your eyes
Says we can beat this

this verse is prettyy self explainatory. my favorite lines are "Its hard to fight when the fight aint fair" and "but theres something in youre eyes says we can beat this" BECAUSEEE: the first one makes me think of the why? why did these girls get this horrible disease? what did they do? and makes me realize the unfairness of the whole situation. the second one is because everytime i look in emmas eyes i see hope. i see the strength that she has and how even in the toughest times she still believes her cure is out there. her eyes tell me to never give up.


then its the chorus that i already explained up there^ thennn


The bridge:
Tonight we stand, get off our knees
Fight for what we’ve worked for all these years
And the battle was long, it’s the fight of our lives
But we’ll stand up champions tonight


the bridge just makes me think of the day of the cure (soon.). i cant even begin to think of how amazing that day is going to be. 


Ending chorus:

It was the night things changed

Can you see it now?

These walls that they put up to hold us back fell down

It’s a revolution, throw your hands up

Cause we never gave in

And we sang hallelujah, we sang hallelujah

Hallelujah

for some reason this song just gives me so much hope. it reminds me what bracelets for rett is all about. the cure. and who its for. the girls (and a couple boys). It also makes me think of the benefit (rockin for rett 3.0!!!) because its the song of the slide show

you wanna buy a bracelet? only 4 bucks. in any two colors you want! 

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.

Purchase a bracelet for only FOUR dollars. Email braceletsforrett@yahoo.com

the R-Word

The last couple days i've realized something. while spending time on facebook insead of in school because my muscles decided they hate me, ive realized that a lot of kids dont realize how good they have it.


on my regular old account of a 15 year old saranac laker, a status that gets 63 likes is from one of the populars and about their life being horrible or a depressing quote.


on my Braceletsfor Rett account, friends with a bunch of family memebers of girls with special needs, a status that gets 63 likes is about someones little girl coming home after a month at the hospital or a six year old finally taking one step independently.


so it got me thinking about the things people think about and what they say, which brings me to the word 'retarded' now i know youre probably thinking "how in the world can that make her think of that?!"


In my high school people throw the R-Word around like they use the word "the" and every single time i hear that word it stings. It makes me so mad. sometiems if its not someone huge and intimidating that could step on me and id be dead that i say something. usually they try and make the argument like "i didnt mean it in  that way!". well guess what Saranac Lake High Schoolers? it doesnt matter.


did you know that on dictionary.com the definitions of the R-Word is "to make slow; delay the development or progress of (anaction, process, etc.); hinder or impede."


do you see the word 'stupid' in there? because i dont. 


i know that emma is not retarded. i KNOW she knows everything going on around her. in fact shes the smartest little five year old i know! but i also know that the R-Word is an evil, disrespectful, degrading word. 

being around someone with disabilities has made me realize that everything you say effects someone. watch this video and tell me that you arent affected by it. 

Somedays i just want to get on the announcements and say "to all the kids here at Saranac Lake High School, how would you like it if everytime you said the rword the word 'handicapped' came out instead. "youre SO handicapped!" "shut up handicap".

does it still mean stupid? didnt think so. 

if this post has inspired you to change your vocabulary go to http://r-word.org/ and take the pledge to help eliminate the word retarded.

i know this post doesn't have a lot to do with rett syndrome but it needed to be said

wanna buy a bracelet?!?!??!?! help raise money AND awareness. get one and show people and tell them where you got it and what its for! 

email us at braceletsforrett@yahoo.com with your TWO favorite colors and wrist size (small, medium, or large)! 

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.

Thanksgiving!

Happy almost Thanksgiving!

Almost time for turkey, potatoes, cranberry sauce, and most importantly-family.

the definition of Thanksgiving Day on dictionary.com is 'a national holiday celebrated as a day of feasting and giving thanks'

So what are you thankful for?

This year I'm thankful for my whole life. The people in it, the abilities I have, my family, friends, house, everything. If you asked me to explain every single thing im thankful for youd be bored to tears by the end! So today ill just focus on ONE. I am thankful for Rett Syndrome. Obviously not for the body stealing, seizure causing, monsterous side of Rett, but more like the influence its had on me.

Im thankful for the people that have the same mission as I do, the cure.

Im thankful for the ones ive met and enjoyed the company of their lovely and adorable daughters and sons (even if the year before it was FREEZING)

Im thankful for the person ive become. A couple years ago I would have watched this(http://vimeo.com/31038459) video, said AWH and moved on. But yesterday I watched it and struggled to hold back tears. Ive seen the little things in life matter most and that I should appreciate the things I can do.

Im thankful for the researchers that work day in and day out for the cure (SOO CLOSE).

And last but not least, im thankful for miss emma

who has been strong through the seizures, regression, frustration. Through Rett Syndrome. Dont worry emma gem, pretty soon youll itll be your turn to play with the doll house, to play tag, etc...

did you know that you can make that 'soon' even SOONER!? These bracelets make FABULOUS christmas presents for family and friends. Got a daughter that wants to give presents to EVERY single one of her friends this holiday season? Well these bracelets are fun, cheap, and for a good cause. So order them today! Email braceletsforrett@yahoo.com with your 2 colors per bracelet and wrist size (small, medium, or large.)

have a GREAT thanksgiving!

Smile. Laugh. Love.

Did you read that? It says "Someday everything will all make perfect sense. so for now laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason."

Its true.

because someday everything will make perfect sense. Someday youll look back to the past and think "remember when things were bad?" and then youll be sad for a minute as you remember how you had lost all those dreams for that little girl. How  you went through so much. and then youll be happy as you think of youre life at the mmoment and watch your daughter (a rett syndrome survivor) as she runs through the sprinklers and lives the childhood she had lost.

But right now while you wait do those things. "laugh at the confusion" dont look at her and think Why did rett syndrome choose her? laugh at her contagious smile. laugh when she laughs. laugh at the innocence you use to have. just laugh.

"smile through the tears"even though youre crying at the unfairness of it all smile while you think of how its going to be once theres a cure. smile as you think of how much fun shell have once her legs learn to work. just smile.

because someday itll all be okay. everything happens for a reason. Rett Syndrome is making you stronger. Its making you have hope. Be optimistic. All these things are happening for a reason.

A tribute to Livvy

Whos your hero? Most kids my age will say celebrities like Taylor Swift or Lady Gaga. But for me its not like that. When ihear the word hero I think Emma. And then my mind goes to a little girl that I never got to meet but has touched me in a way like no other.

Olivia Georgia Meredith.

Olivia, better known as Livvy had Rett Syndrome. She went to play in heaven three years ago to the day. Livvy lived in the UK with her mom, Sara, and dad and three sisters.

It may sound weird to a lot of people but ive truly been inspired by this little girl that I never met and only heard of about a year ago. I found livvys site (http://livvyssmile.com/) last winter when I was researching up on Rett Syndrome. I simply typed “Rett syndrome girls” into google and went to the bottom of the page and clicked on the last entry and Livvys Smile popped up. I went a little further onto the Livvys Smile website and found myself amazed at the strength of this little girl. I mean ive seen strength before but it was shocking. As Abraham Lincoln said “And in the end its not the years in your life that count. Its the life in your years” and Livvy surely had a full life.

I think little Livvy was a major turning point for me. When I found her I realized that there needs to be a cure and im going to play a part in it. I found Livvys mom on twitter and her blog http://www.walkingwithangels.co.uk/ and was blown away by the stories and strength in this family.

So today on the 3 year anniversary of the day Livvys body went to heaven I write for her. Livvy is one of my many heros. She has secured her place in my mind and heart forever. Even though Livvy isnt physically on earth her legacy and soul continue to touch many.

Thank you Olivia Georgia Meredith, for being so strong. For being such an inspiration.

Help us find the cure so that all little girls have a chance to run and play and sing before they meet god.

Buy a bracelet, Find us on facebook (braceletsfor Rett), Follow us on twitter(braceletsforett), Share this blog, Consider a donation.

And today while you do that, think of Livvy.

GirlPower2Cure

Hey guys!!!

I just want to start off saying i hope you all had a wonderful week and a super Halloween!

Tonight i write a special thank you to some amazing families Ive met for being so inspirational. They each have a beatiful daughter with Rett Syndrome and came all the way up to the Adirondacks for our Rockin for Rett 3.0 benefit. Such an amazing experience! Check out the slide show of the event HERE! So thank you to the Shuberts, The Budds, the Sullivans, the Burns, Jamieson and daughter Jordan, Mike and daughter Emma, and Kelly Butler.

Kelly Butler is the cofounder of the beyond amazing Girl Power 2 Cure. This awesome organization was founded in 2006 as a place to help raise funds and awareness and also bring support and hope to families dealing with Rett Syndrome. Let me tell you something, GP2C has brought sooooooooooooo much hope its unbelievable. The power of the families involved is incredibly inspiring.

(a flower of hope)

GP2C does a "Story of the Week" where they share stories of hope and awareness. For example my adorable little cousin Sarah has been Story of the Week for her campaign Pennies for Rett! and guess whos story of the week this week!? Thats right!! MMEEE!!!!!!(: I want to thank GP2C for birnging awareness to this blog/organization and for bieng amazing!(:
(Read the story HERE!)

I hope all you readers that came over via GP2C buy a bracelet! They make the PERFECT holiday gift for a friend or family for ONLY 4 dollars!!! We have TONS of colors to chose from to suit anyone! get your own and email braceletsforrett@yahoo.com with your 2 favorite colors and wrist size (small medium or large) and well get back to you! Thanks for visiting and have a GREAT weekend!

**Click on the blue words and go to different websites!

October- the LAST day!!!

Happy Halloween!!! today is the LAST day of October which is a lot of things! its halloween, the end of down syndrome awareness month. the end of breast cancer awareness month, and last but not least, the LAST day of Rett Syndrome awareness month. I had a huge important last day of 15 day campaign post planned out but it hasnt quite come together yet so ill post it as a regular post someday soon hopefully! I have one final Rett fact for you tonight, i mean not final forever but final for the month of october until next year.

You will wake up tomorrow and it will be November 1st. Rett Syndrome awareness month will end. Your thoughts about the disease may end until next year or until April, Autism awarenss month. But for these girls it never ends. Rett Syndrome is a constant day to day struggle to do just the simplist things. These girls will wake up tomorrow only to find themselves still trapped in that same uncooprative body.

You could help be part of the monumental cure that will free thousnads of girls from the prisons that is their bodies. YOU could help play a role in the cure that could lead to numerous other cures. you. all it takes is a simple donation and you could help those girls whos fight doesnt end tomorrow. Consider the fact that Rett Syndrome is normal. You could one day have a baby girl with this particular gene mutation. You will then realize how important it is. Thank you for supporting. Please check out Braceletsfor Rett on facebook or braceletsforett on twitter and SHARE SHARE SHARE this blog with your friends and family. Your support means more than you can imagine!! Have a wonderful Halloween and check back someday soon for the next update!

October- Day 15

Only one day left of the 15 day campaign! i might not even get around to posting tomorrow since its Halloween. If i dont, have a WONDERFUL halloween!!!

• Seizures.
• Gastrointestinal issues
• Small head
• small feet
• cold hands/feet
• delayed growth
• inexpected death
• unusual sleeping patterns
• scoliosis
• thin bones
• apraxia
• loss of ability to communicate
• heart problems

These are all risk factors for Rett Syndrome. Can you imagine? being five years old and already experiencing these things? Thats something no one should ever go through let alone an innocent 5 year old curly haired blue eyed girl.

Did you know you can help? Its as easy as ordering your very own bracelet. Sharing us on facebook. following us on twitter. visitiing girlpower2cure.org. consider it. and think of her beautiful face while doing it.

October- Day 13/14

Hey readerrrss!!!! SOOO sorry i missed yesterday!!! we had the haunted school for SLHS art club and didnt get home till like 9:30!!!! to make up for the missing a day ill post two facts about Rett Syndrome!!

Day 13-
              Did you know that girls with Rett Syndrome are in there? They are trapped in a body that doesnt function correctly. they can understand every single word you say. A phrase used for people with mental handicaps is "Mentally Retarded" but over the years the use of the derogetory term retarded has become more common when saying things are stupid or foolish. Even though Rett Syndrome takes away a girls abilities does that mean shes stupid? Does that give you the right to make fun of her every single time you say something is "retarded" or call someone a "retard"? what did this little girl ever do to you? For more information on the R-word check out http://r-word.org/ and help prevent the word retarded. for her

Day 14-
              My day 13 fact was kind of leading up to this but this fact is going to be about eye gaze computers and communcation devices. Even though girls with Rett Syndrome cant talk they can still communicate in some ways. Some girls (like em) have enough purposful hand movement to use devices like this! and others with less hand use, use eye gaze computers like THIS!  i must say that communcation devices are pretty amazing. Imagine not being about to talk to anyone and suddenly having a choice with the yes or no cards on these devices. Or being in pain and not being able tell where and then using the eye gaze being able to point it out. I hope that some day all of the people in the world that dont have words will be able to have one of these.

Thanks for visiting and once again SOO sorry about yesterday. so busy! Dont forget to order your bracelet now for only 4 dollars! They make GREAT christmas gifts!!

October- Day 12

ALMOST FRIDAYY!! good thing right! Now tonight im doing something differnt. Its not really a fact. Today im going to write about Rett Syndrome from my perspective. Im writing about what its like to have a little cousin with Rett Syndrome.


Here we go.


The thing about having a small imediate family is that every birth is huge. every death is like your own. every fight is like its you. Its like they arent just your family members that live miles away and you dred going to visit. Its like every one of them hold a peice of you. I come from one of those families. I spend more time with various family memebers than with my friends from school (which is apparently odd for a 15 year old girl).


As you can imagine the news of the last little baby in my immediate family was not taken lightly. Everyone was so excited for the new baby to be born! She would be the perfect little girl and no one would ever suspect anything was wrong.


And nothing wass! when she was born on april 27 everyone was so pumped! i remember telling the bus driver that after dinner i was going to visit my new baby cousin. I remember how when we got to the hospital that perfect little girl was siting content in her sisters arms. I asked Sarah if she would share her barbies when Emma got old enough to play with them and she replied "only if shes nice to me". Such a sarah remark. It seemed like every thing in the world was perfect.


Until she stopped developing. I can recall moments in like fifth grade when my friend had a new cousin about emmas age and she said that one family outtings she was always stuck chasing the baby around. I remember thinking "wait a secondd..sometihng isnt right". There are times that i look back on those days and think " ohh if only i woulda known what we were in for" or tell myself not to take the little things for granted. Like for instance her ability to hold toys. I wish she still had that.


It wasnt till February 08 i started taking my own thoughts as something real. When em had her first seizures. that was such an eye opener for me. and then the months of serching. i remember being confused at what was happening to little emmy.

(It took like fourteen tries just to get this picture right(:)

It wasnt until the diagnosis that it really hit. This was real. this isnt fake. Now a days i feel like em and sarah have become my sisters rather than my cousins. like theyre part of me. Somedays i cant shake the feeling that the cure is right there. all we need is a little help. Ive come to be that help. Will you be that too?

October- Day 11

Tonights post is short and sweet.

Did you know that Rett girls cant use there hands much? Rett Syndrome is classified as a movement disorder. This means the muscles are affected greatly. The muscles of a girl with Rett Syndrome are constantly either in there mouth, clapping, or wringing (click here to see an example). 

This repeative movement often impairs them from using their hands purposfully. Before we knew Emma would spend her time with her hands in her mouth we tried learning sing language. I learned random words like bird, pasta, sweep, more, and whale. but now em cant use her hands. That doesnt stop us from loving her though.

I have heard of one girl named Karly who is able to communicate using a keyboard. Its SOOO amazing. Check out Karlys girl power page HERE or read some of her blog HERE!

Sorry for the short post tonight but its been a long day!

Hopefully a little Emma cutness will make up for it!

October- Day 10

Guess What!? Theres only 6 days left of learning one new Rett fact a day until we go back to regular posting! Ive come tonight to ask a HUGE favor, PLEASE PLEASE PLEASE share this link with your friends/family. The only way there will ever be a cure is if the WORLD knows of Rett Syndrome. All i ask is for a simple facebook post/tweet/conversation. ANYTHING.

I know i touched on this subject last night but i want to go more in depth into one of the four stages of Rett Syndrome.

Did you know that the regression stage hits almost immediatly? One day your sweet girl crawls. She climbs on chairs. She runs around. You wish for a break. You want her to stay out of trouble. You want to not have to keep an eye on her every second. But then Rett Syndrome comes along. She stares at the ceiling. Crys at nothing. Barely walks anymore. Now you want her seizures to stay away. You want a break from hospitals. You want her to run up the slide. You wish for her to get in trouble.

One day your little girl wont be quiet. Shes Always screaming in your ear. You cant do something without her asking questions. All you want is a moment of peace and quiet. You cant wait for nap time because then the house is silent. Until rett Syndrome hits. Soon you miss her screaming. You miss answering questions about everything. Your house is to quiet. You dread naptime for fear she wont wake up.

I remember when my littlest cousin was born. We were going to teach her all sorts of things. Wed share our barbies. Paint each others nails. Have bike races. Play with the doll house. And then Rett Syndrome. Now at family get togethers we sit and talk to her. We encourage her to hit the button. We long for those lost dreams.

PLEASE help find the cure for Rett Syndrome. Its not just a dissease. Its a theif. It steals dreams and replaces them with hospital visits and therapy. Please help find the cure so no family has to know the pain of watching their little girls abilities slip away.

October- Day 9

Happy Monday! I just want to start out by saying pointing out the new additions to the blog! I've added a playlist so while you're readin up on your Rett Fact  you can listen to music! you can also pause this music if you prefer to read in silence by scrolling down and clicking pause!

Did you know that Rett Syndrome comes in stages? The first stage is called Early Onset. The second, Rapid Destruction, the third, pseudo-stationary, and the fourth, late motor deterioration.

The early onset stage is often overlooked. This is the stage between 6 months and 18 months. The symptoms are barely appearing and development is only slowing, not regressing. Usually this stage only lasts a few months but has been known to last a year in some cases.

The rapid destructive stage is also known regression. This is one of the most heart wrenching stages. This stage happens usually between one year and four years of age. This is the stage where little girls lose skills, they stop speaking, stop walking in some cases, start hand mouthing. Breathing irregularities and disrupted sleeping patterns may occur and the girls head growth slows.

The stage after regression is called the pseudo-stationary stage, also known as the plateau stage. This is the stage that many girls live for the rest of their lives in. The plateau stage is the stage in which issues like seizures and scoliosis begin. Even though this may come with other medical issues girls usually begin to level out in this stage. They show less irritablity, improvment in behavior, and more medical stability. 

The fourth stage of Rett Syndrome is called the late motor deterioration stage. This stage can cause things like muscle weakness, dystonia, or spacticity. Girls who were able to walk may stop. Hang wringing may stop and eye gaze continutes to strengthen. 

No little girl should have to go through the 4 stages of Rett Syndrome so help find the cure and make it the FIRST ever cured brain disorder!

  

October- Day 8

Hey everyone! i know this blog and organization is everything Rett but i just want to mention something different. As well as Rett Syndrome awareness month, october is also down syndrome month. I know a remarkable woman who has a daughter with Rett, Brooklyn, and a son with down syndrome, Boston, and those kids are SOOO adorable. they both have remarkable stories, Boston was born at only 2 pounds! hes a real miracle baby.

To visit brooklyns blog, click here!

and to visit Bostons blog, click here!


and Noww its time for the Rett fact of the day!

Did you know that not only does Rett Syndrome affect the little girl it traps but it changes the whole family. I have been priviledged enough to meet some VERY amazing families that have been affected by Rett. Ive spent evenings hanging out with three kids under the age of 11 that all have a sibling with Rett Syndrome. These kids, one of them being my cousin, are amazingly mature. Theyve learned the ways of there sisters and can read them better than most, theyve raised awareness and money for them, they know medical stuff that no 10 year old should have to know.  These kids have become older and more mature completely against there will because of Rett Syndrome, i love this group of kids and look up to them because they know the good in the world. Thye know wrong from right. Thank you Sarah, A, C, R, and V, you guys are amazing. (names are shortened for security)

Please consider making a donation to help stop the maddness that Rett Syndrome is. Its as simple as donating a tweet, a facebook status, painting your toes. ANYTHING. and trust me, your donations mean more than you could ever imagine.