What is Rett Syndrome?
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- čas přidán 2. 03. 2020
- Listen to Brooke's, Isabel's and Tatum's parents to learn more about Rett Syndrome, the challenges as well as the hopes and dreams for their children.
About Rett Syndrome:
Rett Syndrome is a debilitating neurological disorder diagnosed almost exclusively in females. Rett Syndrome has been thought to affect 1 in 10,000 females. It is now believed, however, that the prevalence rate of Rett may be much higher. Although rare, it is possible for boys to also have the disorder.
Children with the disorder are born without any signs of the syndrome, but they lose their ability to speak by the age of two. Then the children become profoundly disabled, requiring 24 hour assistance with every aspect of daily living.
About Rocky Mountain Rett Association (RMRA):
The Rocky Mountain Rett Association is dedicated to improving the quality of life for children and their families impacted by Rett Syndrome. We provide resources, engage in advocacy, education and awareness efforts, and raise funds to support the search for a cure and to run the Rett Clinic at Children’s Hospital Colorado.
The parents of these children are totally awesome! ❤
All these girls are beautiful in a special way. They seem to be much more than what we can see.
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. 💓
Brooke looks SO much like her Mom.
Extremely rare but extremely devastating like it doesn’t make sense
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
God bless you all 🙏♥️
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😠😕
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.
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
Love Tatum 🥰💫 you are beautiful!! Hi sweet girl
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 😢
Please
We need subtitle to other languages
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 😢
💗💫🕊
My sister has rett syndrome
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.”
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.
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.