My sweet cousin Grace has A severe case RETT syndrome. She was diagnosed extremely early on in life. She is 22 and has such a beautiful personality. She’s never been able to talk, walk, use her limbs, or do anything on her own. However, with consistent hope and care, she’s been able to show emotion and communicate in her own ways. It hasn’t been easy seeing her go through this but she’s always been so positive and happy. I hope there can be more research about this and more awareness. Prayers for anyone else’s family going through this or any medical issues. It isn’t easy but no one is ever alone. 💓
They r beautiful.. They are angels to the family.... Never look at them with disgust or sympathy... They r the gems among us tht will alwys loves us with all heart eventhough thy cant tell us personally.. May the cure come fast
My sister has it. There's no cure, no hope, only pain, suffering, and regression. Most Retts girls have microcephaly, contractures, brain damage, stunted growth, seizures, autism, spinal fusions, cut tendons etc. How on earth can those things be reversed/cured. Seeing someone suffer with Retts is beyond disturbing, like a real life horror movie.
@@reesecup3ify that makes me disgusted mad to hear that, my sister has Rett syndrome, I know it can’t be cured and I don’t like either when I see people say something about cure. But to have the audacity to say that it is a horror movie, only pain, suffering makes me seriously sad to hear, if that’s your way of thinking you should change it, there is a lot of happy smiles, a lot of good memories, this child dosent even know she is diffrent, so if you think they are in pain they are not and you should know that how can you say that😠😕
Music therapy would be such an amazing tool to help these cuties out. Seeing as most of them love music that would be a fantastic opportunity! I can already think of several activities that could be helpful, as a soon to be MT. Wishing these families all the support and love 💜
I live with a family member who has retts. It is truly disturbing. Like a real life horror movie. I can't even imagine the life of suffering these girls are subjected to. A fate worse than death.
My sister is also diagnosed with rett syndrome.....if there was some kind of community for rett syndrome...then it would be of great help....From Bangladesh 😢
Good question! It's a special device that tracks the eyes. It can be programmed to work and is tremendously helpful for people who cannot talk or have motor function issues.
My brother have 3 kids all girls two of them rett syndrome victims one is not because she's haven't feed by mother in 3months my relative have same case two of them rett syndrome victims one is not because she also haven't feed by mother .now I have doubt may be there something wrong with mother feeding I main cause of rett syndrome.plzz (confirm sry for bad English)
Two different family members each have 2 kids with Retts? I don't even think that's possible. Its not even hereditary. Your family members have a history of not feeding their children? I think it's something else and not retts.
I believe the commenter was referring to breastfeeding as “fed by mother.” They are either using a translator or painstakingly translating from another language word by word. Same might be said for the term “relative.”
Look at my comment at the top. Boys usually die in Utero (meaning in the Uterus) or shortly after birth. Males have the XY Chromosomes and females have the XX Chromosomes. It is thought that one X Chromosome helps support the other through the first stages of life with Rett Syndrome and since males do not carry an extra X but a Y they can not live as long. This theory has not been fully established yet. There are a very few males that do live, but they do not live long. Girls don't live as long either, but they do tend to live longer than the males. Hope this has been of help.
The parents of these children are totally awesome! ❤
My sweet cousin Grace has A severe case RETT syndrome. She was diagnosed extremely early on in life. She is 22 and has such a beautiful personality. She’s never been able to talk, walk, use her limbs, or do anything on her own. However, with consistent hope and care, she’s been able to show emotion and communicate in her own ways. It hasn’t been easy seeing her go through this but she’s always been so positive and happy. I hope there can be more research about this and more awareness. Prayers for anyone else’s family going through this or any medical issues. It isn’t easy but no one is ever alone. 💓
All these girls are beautiful in a special way. They seem to be much more than what we can see.
They r beautiful.. They are angels to the family.... Never look at them with disgust or sympathy... They r the gems among us tht will alwys loves us with all heart eventhough thy cant tell us personally.. May the cure come fast
Extremely rare but extremely devastating like it doesn’t make sense
Bless you and your families. I hope a cure is around the corner.
My sister has it. There's no cure, no hope, only pain, suffering, and regression. Most Retts girls have microcephaly, contractures, brain damage, stunted growth, seizures, autism, spinal fusions, cut tendons etc. How on earth can those things be reversed/cured. Seeing someone suffer with Retts is beyond disturbing, like a real life horror movie.
@@reesecup3ify that makes me disgusted mad to hear that, my sister has Rett syndrome, I know it can’t be cured and I don’t like either when I see people say something about cure. But to have the audacity to say that it is a horror movie, only pain, suffering makes me seriously sad to hear, if that’s your way of thinking you should change it, there is a lot of happy smiles, a lot of good memories, this child dosent even know she is diffrent, so if you think they are in pain they are not and you should know that how can you say that😠😕
God bless you all 🙏♥️
Brooke looks SO much like her Mom.
Music therapy would be such an amazing tool to help these cuties out. Seeing as most of them love music that would be a fantastic opportunity! I can already think of several activities that could be helpful, as a soon to be MT. Wishing these families all the support and love 💜
I am a medical specialist. No, music aggravates their mental communication.
@@francescocastellaneta Plz, don't spread fake info, Mr. Nobody: www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=pubmed.ncbi.nlm.nih.gov/30670340/&ved=2ahUKEwjgroDi7s6CAxW0RPEDHUNWA70QFnoECCMQAQ&usg=AOvVaw0syBobxnuECFrb4udzg779
I live with a family member who has retts. It is truly disturbing. Like a real life horror movie. I can't even imagine the life of suffering these girls are subjected to. A fate worse than death.
My daughter she is almost 10 she is also suffering from this disease
And I want to see the daily routine of any other family bcoz it’s helpful for me if anyone have youtube channel plz give me a link
My sister is also diagnosed with that disease......from Bangladesh 😢
Love Tatum 🥰💫 you are beautiful!! Hi sweet girl
My sister is also diagnosed with rett syndrome.....if there was some kind of community for rett syndrome...then it would be of great help....From Bangladesh 😢
Please
We need subtitle to other languages
My sister has rett syndrome
💗💫🕊
How can words on the tablet work when her hands are not even touching the screen?
Good question! It's a special device that tracks the eyes. It can be programmed to work and is tremendously helpful for people who cannot talk or have motor function issues.
@ awesome! Thank you for the information!!
Does broke grind her teeth
That is common in patients with Rett Syndrome. Anyways all of these girls have sweet personalities and have definitely stole my ❤💜
Bruxism is a typical sign of Rett.
My brother have 3 kids all girls two of them rett syndrome victims one is not because she's haven't feed by mother in 3months my relative have same case two of them rett syndrome victims one is not because she also haven't feed by mother .now I have doubt may be there something wrong with mother feeding I main cause of rett syndrome.plzz (confirm sry for bad English)
No
Two different family members each have 2 kids with Retts? I don't even think that's possible. Its not even hereditary. Your family members have a history of not feeding their children? I think it's something else and not retts.
I believe the commenter was referring to breastfeeding as “fed by mother.” They are either using a translator or painstakingly translating from another language word by word. Same might be said for the term “relative.”
Do boys have this ?
Not usually
Very rare
Look at my comment at the top. Boys usually die in Utero (meaning in the Uterus) or shortly after birth. Males have the XY Chromosomes and females have the XX Chromosomes. It is thought that one X Chromosome helps support the other through the first stages of life with Rett Syndrome and since males do not carry an extra X but a Y they can not live as long. This theory has not been fully established yet. There are a very few males that do live, but they do not live long. Girls don't live as long either, but they do tend to live longer than the males. Hope this has been of help.