My Daughter had Rett Symdrome. she lived to be 24ys old. the doctor said she would be lucky to live to be 18 to 20ys old. everything fell into . place. as according to medical studies. No walking, No talking, later need a feeding tube. she as been passed away since 2006. she had a very good life with her Nanny/Nurse, she smiled, happy, played with her toys, or color, watched TV. she died peacefully. Now she is in a most Beautiful Place only if we could imagine.
+anna copeland I hope this doesn't off in the wrong way or as disrepectful but may I ask how she came to pass? I work with a wonderful girl with Rett and she's turning 25 this winter, would be heartbroken if anything happened to her.
yes just like my daughter, she played with her colorful toys. clapping hand, children with rett syndrome like listening to TV, they watch , they can react to your voice. they laugh quite, I cared for my daughter.. was a single parent. but it didnt bother me. i would do all the work. and provide for her.
my daughter had rett syndrome, she never walked or talked. she was developmentally . she didnt talk, walk, she played with her toys, of color, watched , listened to tv. she ate fine chopped foods. she at any thing as long as it was processed. she stop eating normally, had to get feeding tube. she took meds. she was happy. well cared for. rett symdrome took it course. she was lucky to make it to almost 25ys, she died 24 1/2 ys. 2006. she is at peace. no more pain. not a good thing to watch ..
There was a little girl at my elementary school named abby and she came to the school with rett syndrome. She became a popular icon for our school and we would celebrate rett syndrome awareness day. Now i am in jr high and my brother just left my elementary school saying that abby can say a few words, but depends on a board with words where she would point at them to speak.
To the people who wrote the bad comments these beautiful girls cannot help the way they are and you shouldn't be making fun of them how would you feel if you were like them and people were making fun of you think before you talk!!
My sister has rett syndrome, and she is so pretty and so loving! She can talk, but only one word at a time. I went to a rett syndrome conference here in the uk and i was quite surprised because my sister was the only one who could actually talk, and i didnt realise that it was that rare for them to talk! I also noticed they all seemed to like watching dvds on their portable dvd players which my sister is obsessed with lol
I work in disability support with a 40 year old woman with Rett syndrome. She is non verbal, does not communicate in any way, doesn't look at you etc. The only thing she does is the hand movements, touching her mouth and will open her mouth to eat. Can anyone tell me how capable she is of perception, thoughts etc? She doesn't smile or anything? Is it likely she is totally unaware of her surroundings? No one at work can give me a clear answer... thanks
Nevermind, I found my own answer. While the gene mutation is a dominant one, >99% of cases are spontaneous mutations. Those interested should check out the OMIM gene database.
@ByeByeBelly 1. Hi! I just started to support a 21yo girl with Rett.. She's non verbal to and she plays very often with her hands and gets a lot of strong an ~20min long epileptic attacs. Well what I can tell you about her percetion is that she ist able to percet her entourage, but it totaly depends on how she feels.. like if she's nervous or something, she is totaly concentrated on her hands and she seems to be in some sort of trance..
Hi, You are definitely on to something. When people ask me to "describe" Rett's I tell them this" Take Autism, Cerebral Palsy, Epilepsy, Parkinson's and Scoliosis and add them up; these are all the diseases one Rett's girl lives with. For more information, please follow my RUclips Channel, Caitlin's Hope for Rett's Syndrome. Thanks! Proceeds help Rett's R&D.
@ByeByeBelly 2. BUT, on the other hand for exemple, she gets a huge smile when she sees someone she knows or when someone sings a song she likes :) So I would say that I do think that she's able to percept what happends around her.. but I think it does depend on what kind of Rett she "suffers"(sry forgot the right word :) ) . The problem with Rett, if i'm not totaly wrong, is that its a degenerative syndrom.maybe it's like "the older you get, the more you loose ur capacities/perception"
May i ask, im going to report this on tuesday, how come that they are prone on having gastrointestinal problems? and rett's syndrome have 4 stages right? can you please elaborate it for me. thanks a lot. it will be a big help.
Are those the biological parents in the video? The reason I ask is because Rett's is an X-linked dominant condition. Meaning, one (or both, but unlikely) of the parents MUST have the disease. Perhaps the affected parent has reduced penetrance or is a mosaic (Szchristie, do you know the parents?)?
Eu tenho uma filha com Sindrome de Rett, sou muito feliz com ela, Maiza é o seu nome,ela esta com 19 anos, e é linda, e eu a amo muito, muito mesmo!!!!!!!!
My son has severe autism, God didn't make our children this way, the toxic world man made did this to them. God wouldn't want us to just give up and shun him for that. He didn't stop this from happening to our kids, but he didn't cause this to happen either.
hi guys, im an OT student doing a presentation on a fictitious girl who is 11years old with rett's syndrome, is there any info i can get from any charities or websites to help me? thanks xx
there was a diagnosed case of it in 1995 in a male...but 99.5% of rs is in females...The male that did have it and they did a case study on, his 23rd chromosome was XXY
@roxerka poor us who have become slaves in this world and can not appreciate freedom of these innocent care free children.. at least their parents have something great and precious to live their life for if this world is still spinning its because of these innocent children who always remain innocent..
@Mzkikiwilcoxson90 in a way you are being mean! she's ringing her hands! its in rett syndrome. If she's doing something with her hands that means it has to do with the disorder!
I think one should thank God for all the great gifts he gave us, and for creating us in perfect health. BTW, Rett disorder is very rare, only 8 cases in every 100,000 population.
@CJEB4 i dont want his forgiveness, i dont want to be saved. i want his help, my daughter wants his help, countless ppl around the world cry out for him, to help but he doesnt. you can keep your god. me and mine will do it ourselves.
@TehNetherlands I don't even understand how your comment pertains to anything I said lol. I am always looking into research to help my son. I beleive in a God, but am not "religious" I just don't beleive it is "God's fault" that my son has severe autism, I think a toxic overload is what caused this, and because of my research and willingness to help him, my son gets better every day.
@CJEB4 I'm sorry for your problems, but please don't act like your son's disability is man's fault, because obviously it's not. Nature isn't perfect and sometimes these things happen, it happens to humans just like it happens to other animals. The mechanics of nature simply don't care. If you believe God created nature, then it should naturally follow that God is responsible for your suffering. Man is not. In fact, only man is capable of helping your son.
my daughter had rett syndrome, she never walked or talked. she was developmentally . she didnt talk, walk, she played with her toys, of color, watched , listened to tv. she ate fine chopped foods. she at any thing as long as it was processed. she stop eating normally, had to get feeding tube. she took meds. she was happy. well cared for. rett symdrome took it course. she was lucky to make it to almost 25ys, she died 24 1/2 ys. 2006. she is at peace. no more pain. not a good thing to watch ..
![Kodak Black - Catch Fire [Official Music Video]](http://i.ytimg.com/vi/A4ch-olIuZo/mqdefault.jpg)
My Daughter had Rett Symdrome. she lived to be 24ys old.
the doctor said she would be lucky to live to be 18 to 20ys old. everything fell into . place. as according to medical studies. No walking, No talking, later need a feeding tube. she as been passed away since 2006. she had a very good life with her Nanny/Nurse, she smiled, happy, played with her toys, or color, watched TV. she died peacefully. Now she is in a most Beautiful Place only if we could imagine.
+anna copeland I hope this doesn't off in the wrong way or as disrepectful but may I ask how she came to pass? I work with a wonderful girl with Rett and she's turning 25 this winter, would be heartbroken if anything happened to her.
My sister died last year..she bacame 52 years old, with severe Rett Syndrome. They couldn´t treat her, when she cot a cancer attack in her neck.
yes just like my daughter, she played with her colorful toys. clapping hand, children with rett syndrome like listening to TV, they watch , they can react to your voice. they laugh quite, I cared for my daughter.. was a single parent. but it didnt bother me. i would do all the work. and provide for her.
All these children are ADORABLE!! How could you not fall in love with them!!??
my daughter had rett syndrome, she never walked or talked. she was developmentally . she didnt talk, walk, she played with her toys, of color, watched , listened to tv. she ate fine chopped foods. she at any thing as long as it was processed. she stop eating normally, had to get feeding tube. she took meds. she was happy. well cared for. rett symdrome took it course. she was lucky to make it to almost 25ys, she died 24 1/2 ys. 2006. she is at peace. no more pain. not a good thing to watch ..
ann a copeland
There was a little girl at my elementary school named abby and she came to the school with rett syndrome. She became a popular icon for our school and we would celebrate rett syndrome awareness day. Now i am in jr high and my brother just left my elementary school saying that abby can say a few words, but depends on a board with words where she would point at them to speak.
To the people who wrote the bad comments these beautiful girls cannot help the way they are and you shouldn't be making fun of them how would you feel if you were like them and people were making fun of you think before you talk!!
my first great grandaughter ( I am 58) was diagnosed recently with this disease. I am devastated.
Robert Slack don't be, its a blessing! a tough road that not many walk but a beautiful one filled with love
It´s not a blessing Kurtis, but they are adorable anyway, loving and love pets.
My sister has rett syndrome, and she is so pretty and so loving! She can talk, but only one word at a time. I went to a rett syndrome conference here in the uk and i was quite surprised because my sister was the only one who could actually talk, and i didnt realise that it was that rare for them to talk! I also noticed they all seemed to like watching dvds on their portable dvd players which my sister is obsessed with lol
I work in disability support with a 40 year old woman with Rett syndrome. She is non verbal, does not communicate in any way, doesn't look at you etc. The only thing she does is the hand movements, touching her mouth and will open her mouth to eat. Can anyone tell me how capable she is of perception, thoughts etc? She doesn't smile or anything? Is it likely she is totally unaware of her surroundings? No one at work can give me a clear answer... thanks
Nevermind, I found my own answer. While the gene mutation is a dominant one, >99% of cases are spontaneous mutations. Those interested should check out the OMIM gene database.
That little girl, Jill, is SO CUTE!!
@ByeByeBelly
1.
Hi! I just started to support a 21yo girl with Rett.. She's non verbal to and she plays very often with her hands and gets a lot of strong an ~20min long epileptic attacs.
Well what I can tell you about her percetion is that she ist able to percet her entourage, but it totaly depends on how she feels.. like if she's nervous or something, she is totaly concentrated on her hands and she seems to be in some sort of trance..
There is always hope, just keep praying
Hi, You are definitely on to something. When people ask me to "describe" Rett's I tell them this"
Take Autism, Cerebral Palsy, Epilepsy, Parkinson's and Scoliosis and add them up; these are all the diseases one Rett's girl lives with.
For more information, please follow my RUclips Channel, Caitlin's Hope for Rett's Syndrome. Thanks! Proceeds help Rett's R&D.
The epileptical part is getting less as years are passing
@ByeByeBelly
2.
BUT, on the other hand for exemple, she gets a huge smile when she sees someone she knows or when someone sings a song she likes :) So I would say that I do think that she's able to percept what happends around her.. but I think it does depend on what kind of Rett she "suffers"(sry forgot the right word :) ) .
The problem with Rett, if i'm not totaly wrong, is that its a degenerative syndrom.maybe it's like "the older you get, the more you loose ur capacities/perception"
May i ask, im going to report this on tuesday, how come that they are prone on having gastrointestinal problems? and rett's syndrome have 4 stages right? can you please elaborate it for me. thanks a lot. it will be a big help.
@ChristinePadillaELA Like most mental disorders, it doesn't run in families.
The girl at 1:55 has such a lovely smile!
Are those the biological parents in the video? The reason I ask is because Rett's is an X-linked dominant condition. Meaning, one (or both, but unlikely) of the parents MUST have the disease. Perhaps the affected parent has reduced penetrance or is a mosaic (Szchristie, do you know the parents?)?
Eu tenho uma filha com Sindrome de Rett, sou muito feliz com ela, Maiza é o seu nome,ela esta com 19 anos, e é linda, e eu a amo muito, muito mesmo!!!!!!!!
I have a sister who has Rett syndrome i'm 11 and i think she's the prettiest girl in the world for an older sister!
Actually it can occur in boys but is very rare.
i have a question..are they aware of whats happening to them?
My son has severe autism, God didn't make our children this way, the toxic world man made did this to them. God wouldn't want us to just give up and shun him for that. He didn't stop this from happening to our kids, but he didn't cause this to happen either.
it is not a type of autism, it is classified on its own.
Yes, I'm sure. I'm waiting for the results of genetic testing on my son.
sorry a bit late, but how was the results?
hi guys, im an OT student doing a presentation on a fictitious girl who is 11years old with rett's syndrome, is there any info i can get from any charities or websites to help me? thanks xx
there was a diagnosed case of it in 1995 in a male...but 99.5% of rs is in females...The male that did have it and they did a case study on, his 23rd chromosome was XXY
No thats not true. Boys with an xxy chromosome (Klinefelter's syndrome or XXY Syndrome) can have it too. Its very rare but i work with one.
The reversal was done with mice.
I am losing sound on this at 1:42. Anyone else?
Love you Jilly
Are you sure of that??????
@roxerka
poor us who have become slaves in this world and can not appreciate freedom of these innocent care free children..
at least their parents have something great and precious to live their life for
if this world is still spinning its because of these innocent children who always remain innocent..
@Mzkikiwilcoxson90 in a way you are being mean! she's ringing her hands! its in rett syndrome. If she's doing something with her hands that means it has to do with the disorder!
I think one should thank God for all the great gifts he gave us, and for creating us in perfect health. BTW, Rett disorder is very rare, only 8 cases in every 100,000 population.
The rett syndrome appears on only girls .
I'm sorry but i couldn't keep my laugh at 1:35
@CJEB4 i dont want his forgiveness, i dont want to be saved. i want his help, my daughter wants his help, countless ppl around the world cry out for him, to help but he doesnt. you can keep your god. me and mine will do it ourselves.
@TehNetherlands I don't even understand how your comment pertains to anything I said lol. I am always looking into research to help my son. I beleive in a God, but am not "religious" I just don't beleive it is "God's fault" that my son has severe autism, I think a toxic overload is what caused this, and because of my research and willingness to help him, my son gets better every day.
stereotyped hand-wringing
@unicornpoop09876... My sister also has Rett Syndrome (she's 20) it's hard but, me and mother have that she'll walk and talk once again.
@CJEB4 I'm sorry for your problems, but please don't act like your son's disability is man's fault, because obviously it's not. Nature isn't perfect and sometimes these things happen, it happens to humans just like it happens to other animals. The mechanics of nature simply don't care. If you believe God created nature, then it should naturally follow that God is responsible for your suffering. Man is not. In fact, only man is capable of helping your son.
1 male has had it and he died my frnds sis has it sad see pics of her in 1 of my vids
i love you jen jilly justin griffy and colin
(: xoxoxxo
@dave4248
I like you.
lolz normal fail
my daughter had rett syndrome, she never walked or talked. she was developmentally . she didnt talk, walk, she played with her toys, of color, watched , listened to tv. she ate fine chopped foods. she at any thing as long as it was processed. she stop eating normally, had to get feeding tube. she took meds. she was happy. well cared for. rett symdrome took it course. she was lucky to make it to almost 25ys, she died 24 1/2 ys. 2006. she is at peace. no more pain. not a good thing to watch ..