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!
Monday, October 31, 2011
Sunday, October 30, 2011
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!!!
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.
- 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
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.
Saturday, October 29, 2011
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!!
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
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!!
Thursday, October 27, 2011
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 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?
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?
Wednesday, October 26, 2011
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!
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!
Tuesday, October 25, 2011
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.
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.
Monday, October 24, 2011
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.
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!
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.
Sunday, October 23, 2011
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.
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)
Saturday, October 22, 2011
October- Day 7
Happy Day 7!!! I have GOOD news! we are now on twitter so if you have a twitter follow braceletsforett and recieve tweets everytime the blog is updated! we are also on facebook under the name Braceletsfor Rett so add us as a friend or like our facebook page (Bracelets for Rett Syndrome)!
And now for the Rett fact of the day!
Did you know that along with being trapped Rett girls also deal with medical issues? They go through things worse than anyone should have to let alone an innocent little girl like seizures, scoliosis, feeding tubes, and much more. Everyday i go on facebook and learn of a little girl in the hospital for days having an EEG to find out if she has seizures or unexplained "Rett tremors". I hear of eight year old girls having 12 hour surgeries to fix the painful curve in her back. This post is personal for me because my littlest cousin has seizures. Its horrible to watch. These seizures make me want the cure even more.
Please help stop the maddness because its not fair to these little girls.
Help by spreading the word. The more aware people become, the more donations come in.
Paint your toes purple
share us on facebook
Buy your very own Bracelet for Rett!
Friday, October 21, 2011
October- Day 6
Happy Friday Everyone! Its Day 6!!! only 9 Days left! October is going by SO fast
GOOD NEWS!! we gotta twitter! follow Braceletsforett and show your support!
GOOD NEWS!! we gotta twitter! follow Braceletsforett and show your support!
Did you know that Rett Syndrome is an autism spectrum disorder? It is considered the most severe form of autsim on the scale along with the most disabling. Usually children with typical autsim can walk, talk, take care of themselves, etc..but with Rett Syndrome girls are limited. Sometimes a girl with Rett Syndrome will be diagnosed with autism before they know of Rett Syndrome.
A cure for Rett Syndrome could essentially lead to a cure for autism also so consider donating a facebook status for Rett and youd be helping cure autsim also. Please help because THE CURE, IS NEAR!
Thursday, October 20, 2011
October- Day 5
Happy Thursday everyone!!! Today is day 5!
Did you know that at birth Rett Syndrome is completely undetected? Imagine you have a baby girl who is happy and healthy. You develope dreams for her future and think about what shell be like when she grows up. Will she be crazy and talkative or shy? Your dreams start becoming real as she learns to walk and crawl. She says "I love you mamma" and no one reads your little girl like you do. Now imagine that you wake up one morning and this beautiful little girl seems to have hit a wall. She stares up from her crib, hands in her mouth, and it seems like your little two year old hurricane has gone back to being a newborn in a toddler body. After months of scared testing you finally find the answer and the outlook isnt so good. Your crazy little girl has Rett Syndrome. She may never say she loves you again. Shell laugh at nothing, and cry for hours for no reason other than frustration of being trapped in her own body.
Please help find the cure for Rett Syndrome so that the little girls that are trapped will be free. So that this doesnt happen to anyone elses little girls.
Did you know that at birth Rett Syndrome is completely undetected? Imagine you have a baby girl who is happy and healthy. You develope dreams for her future and think about what shell be like when she grows up. Will she be crazy and talkative or shy? Your dreams start becoming real as she learns to walk and crawl. She says "I love you mamma" and no one reads your little girl like you do. Now imagine that you wake up one morning and this beautiful little girl seems to have hit a wall. She stares up from her crib, hands in her mouth, and it seems like your little two year old hurricane has gone back to being a newborn in a toddler body. After months of scared testing you finally find the answer and the outlook isnt so good. Your crazy little girl has Rett Syndrome. She may never say she loves you again. Shell laugh at nothing, and cry for hours for no reason other than frustration of being trapped in her own body.
Please help find the cure for Rett Syndrome so that the little girls that are trapped will be free. So that this doesnt happen to anyone elses little girls.
Even the smallest donations help. Paint your toes purple, share this blog, buy a bracelet, visit girlpower2cure.org. ANYTHING.
Wednesday, October 19, 2011
October- Day 3/4
HEYYY! im SOO sorry i didnt post yesterday. Essays and Spanish and Chem galore! woo. jk. ANYWAYS, so to make up for it ill post two facts today.
1.
Did you know that 20 girls a day come into this world, perfect and healthy. Little does anyone know that by age three those little girls will be stronger than many. Theyll gain skills rapidly, learning to walk, talk, all those things. and then rapidly lose those skills. twenty little girls a day.
2.
Did you know that Rett Syndrome is genetic disorder linked to the X chromosome? Boys have an XY chromosmes so if aboy was to have Rett it would be rare, usually these cases end up miscarriage or still birth. HOWEVER i have heard of a little boy named Andrew who has Rett Syndrome. Read up on little Andrew HERE !
Please help find our cure. Shes waiting patiently to be free.
1.
Did you know that 20 girls a day come into this world, perfect and healthy. Little does anyone know that by age three those little girls will be stronger than many. Theyll gain skills rapidly, learning to walk, talk, all those things. and then rapidly lose those skills. twenty little girls a day.
2.
Did you know that Rett Syndrome is genetic disorder linked to the X chromosome? Boys have an XY chromosmes so if aboy was to have Rett it would be rare, usually these cases end up miscarriage or still birth. HOWEVER i have heard of a little boy named Andrew who has Rett Syndrome. Read up on little Andrew HERE !
Monday, October 17, 2011
October-Day 2
Today is Day Two of the fifteen day campaign but first i want to share a song that reminds me of my little cousin Emma. Its called Lighthouse by Hope. its a fabulous song! to listen click here ! or to just read the lyrics click here.
and now for the Rett Syndrome fact of the day!
Did you know that in 2007 Rett Syndrome was reversed in mice?
On February 9th, 2007 Dr. Adrian Bird reversed Rett Syndrome in both male and female mice!
Can you believe that?! Not only that but the cure for Rett Syndrome could also lead to cures for other diseases such as autism, parkinsons, cerebral palsy, and MANY more!
So help us find the cure because not only are you helping people with Rett Syndrome but people with numerous other diseases!
help by: Buying a bracelet! Sharing this blog! liking Girl Power 2 Cure on facebook! friending Braceletsfor Rett on facebook! painting your toenails purple! EVEN just telling a friend about Rett Syndrome!
and now for the Rett Syndrome fact of the day!
Did you know that in 2007 Rett Syndrome was reversed in mice?
On February 9th, 2007 Dr. Adrian Bird reversed Rett Syndrome in both male and female mice!
Can you believe that?! Not only that but the cure for Rett Syndrome could also lead to cures for other diseases such as autism, parkinsons, cerebral palsy, and MANY more!
So help us find the cure because not only are you helping people with Rett Syndrome but people with numerous other diseases!
help by: Buying a bracelet! Sharing this blog! liking Girl Power 2 Cure on facebook! friending Braceletsfor Rett on facebook! painting your toenails purple! EVEN just telling a friend about Rett Syndrome!
And think of her while doing it!
Sunday, October 16, 2011
October- Day1
Did you know that October is Rett Syndrome awarness month? Well if you didnt, you do now! I have decided that for the next 15 days i will post one new fact about Rett Syndrome.
Day One-
Did you know that the most severe handicap in Rett Syndrome is apraxia, which means the will to move is present but there is an inability to carry through with the movement. Imagine living a lifetime with severe apraxia. Imagine being trapped in your own body. Imagine wanting to go somewhere but not being able to move there. This. is Rett Syndrome.
Did you know that YOU can help find the cure. All you have to do is buy a bracelet, donate a facebook status, even clicking subscribe on this blog, because ANYTHING helps!
The motto of the IRSF (international Rett Syndrome Foundation) is "Your help, is our hope"
Day One-
Did you know that the most severe handicap in Rett Syndrome is apraxia, which means the will to move is present but there is an inability to carry through with the movement. Imagine living a lifetime with severe apraxia. Imagine being trapped in your own body. Imagine wanting to go somewhere but not being able to move there. This. is Rett Syndrome.
Did you know that YOU can help find the cure. All you have to do is buy a bracelet, donate a facebook status, even clicking subscribe on this blog, because ANYTHING helps!
The motto of the IRSF (international Rett Syndrome Foundation) is "Your help, is our hope"
Do it for her.
Thursday, October 13, 2011
For REALZ!
Hey guys!! so this post is kinda like boom. i was gonna try and run this Bracelets for Rett anonymously but its kinda really hard so i think im going to have to reveal myself. here we go. Hello! My name is Rachel! Im a 15 year old girl from a teeny town called Saranac Lake. I started bracelets for rett in honor of my littest cousin Emma (to read emmys story go here --> http://girls.girlpower2cure.org/emma).
five Random facts about me:
Thanks for visiting this blog!! by the way check us out on Facebook under the name of Braceletsfor Rett (thanks SOO much facebook regulations. jk. mean) or like our page which is under the name of Bracelets For Rett Syndrome!
thanks again!!
five Random facts about me:
- i was born March 24, 1996
- i can play the piano and guitar (also own a uekelale)
- i tend to relate every event of my life to a song
- im not really a fan of shopping. its frustrating.
- my theme song is Change by Taylor Swift
Thanks for visiting this blog!! by the way check us out on Facebook under the name of Braceletsfor Rett (thanks SOO much facebook regulations. jk. mean) or like our page which is under the name of Bracelets For Rett Syndrome!
thanks again!!
Wednesday, October 12, 2011
promises.
I recently made a promise to the little girl that inspired this organization. I'm not going to mention names but I'll tell ya, she is one cute little girl. she smiles everyday no matter what challenge the rett monster gives her.
I promised her something very important. I said "someday you'll be free from your body. someday you'll walk and run and scream and play. someday you'll be able to say whatever's on our mind whenever you want. I promise."
sometimes this promise is so har to keep. sometimes I want to give in because I doubt that I can make this promise happen. I don't want to betray her. I want to keep this promise alive.
as you can imagine this is a very difficult task for just one sixteen year old on a mission so that's when I turn to http://www.girlpower2cure.org/Home.aspx if I ever get fed up with myself I go on gp2c and read the stories of all the beautiful girls afflicted with rett and I keep going. gp2c is a website of hope and love and motivation for me.
so I will keep making tees bracelets to keep my promise and I'll keep being inspire by gp2c. thank you so much to all those ladies at girlpower2cure. you are all my inspirations.
I promised her something very important. I said "someday you'll be free from your body. someday you'll walk and run and scream and play. someday you'll be able to say whatever's on our mind whenever you want. I promise."
sometimes this promise is so har to keep. sometimes I want to give in because I doubt that I can make this promise happen. I don't want to betray her. I want to keep this promise alive.
as you can imagine this is a very difficult task for just one sixteen year old on a mission so that's when I turn to http://www.girlpower2cure.org/Home.aspx if I ever get fed up with myself I go on gp2c and read the stories of all the beautiful girls afflicted with rett and I keep going. gp2c is a website of hope and love and motivation for me.
so I will keep making tees bracelets to keep my promise and I'll keep being inspire by gp2c. thank you so much to all those ladies at girlpower2cure. you are all my inspirations.
Monday, October 10, 2011
Bracelets for Rett Syndrome
Hi! Welcome to the official website of Bracelets for Rett! Here we sell thread bracelets and all the proceeds go to Rett Syndrome research!
What is Rett Syndrome? Well, I'm glad youve asked!(:
Rett Syndrome is:
Now imagine that same daughter at age two. She can no longer sit up and doesn’t grasp with her fingers. She starts having seizures. By the time she’s three, she is always grinding her teeth and stops talking. When she turns six, her spine starts to curve, which limits how well she can move. She screams and laughs during the night for no reason, but doesn’t respond to or interact with others. By her eighth birthday, she can’t move on her own and can’t talk.
This is Rett Syndrome.
October is Rett Syndrome awareness month. You can help cure this monster simply by buying a bracelet.
If you are interested in a bracelet contact me at braceletsforrett@yahoo.com with your two favorite colors and the size of your wrist (small, medium, or large).
The smallest donation counts!
What is Rett Syndrome? Well, I'm glad youve asked!(:
Rett Syndrome is:
- Debilitating neurological (movement) disorder that predominantly affects females.
- Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.
- Caused by a single gene mutation that leads to underproduction of an important brain protein.
- The most severe form of autism.
- The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
- Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
- As prevalent as Cystic Fibrosis, ALS and Huntington's.
- Another little girl is born with Rett Syndrome every 90 minutes.
- Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
Now imagine that same daughter at age two. She can no longer sit up and doesn’t grasp with her fingers. She starts having seizures. By the time she’s three, she is always grinding her teeth and stops talking. When she turns six, her spine starts to curve, which limits how well she can move. She screams and laughs during the night for no reason, but doesn’t respond to or interact with others. By her eighth birthday, she can’t move on her own and can’t talk.
This is Rett Syndrome.
October is Rett Syndrome awareness month. You can help cure this monster simply by buying a bracelet.
If you are interested in a bracelet contact me at braceletsforrett@yahoo.com with your two favorite colors and the size of your wrist (small, medium, or large).
The smallest donation counts!
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