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 son has mcp2 but was diagnosed at 2 with autism. He has low muscle tone and stims alot . He's also non verbal and so sweet despite having severe eczema and self injuring himself . When he is happy he dances to edm 😅 and loves his Disney movies .
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 💜
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)
RETT Syndrome is an abnormality on the X chromosome. Which is why mostly girls get it. It has nothing to do with which mother fed which child. Your brother should stop having children if he already has 2 children with Rett Syndrome. If those girls have typical Rett syndrome they will need total care for the rest of their life. They cannot walk or talk. They have no voluntary movement of their arms and hands. They often have to have their hands/arms gently restrained because they will poke their own eyes and injure them. Or they will wrap their hands around their hair while asleep and then wake up suddenly and tear their hair out. RETT Girls often have a difficult time sleeping because they startle themselves awake in the same way infants do. I became a nurse for an 18 year old girl. When my son was a baby I wrapped him up and swaddled him. He loved it and he slept better than all of my friends’ babies. I tucked my patient’s blanket around her arms firmly. (Not too tight, I didn’t want to hurt her or interfere with her circulation. It worked out really well. Her arms were held in place when she startled herself awake. That was around 2-3 AM. Then I turned her on her side for a couple of hours. Then I turned her on her other side. My point is that girls with RETT Syndrome need to be cared for 24x7. There are no breaks . Ever. Unless your brother has a caregiver for help.; the next 40-60 years for him are going to be feeding, showering, giving his daughters enemas so they can poop. Doing laundry and pretty much never doing anything for yourself.
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.”
She's beautiful, never heard of this condition before. I truly wish I had money to give to help Sophie and many other people but unfortunately I cannot. All I can do is send prayers and love . 🙁❤️❤️❤️❤️❤️❤️🙏🙋🏻♀️🏴
God bless all the girls (and boys) with this lifelong debilitating disease. My daughter (26 months old) was recently diagnosed with Autism. Her neurologist wanted to further test for Rett Syndrome. Thankfully, the result came negative. But while waiting for the results, I relentlessly researched Rett Syndrome and feel deeply touched by it. I will forever remember these children who struggle daily and the warrior parents that support them through it all. Hoping we find a cure for this very soon and I can witness it in my lifetime. Best wishes.
Tatum mom is a real piece of work. Your daughter can't help the way she is. Watch her closely. Her actions is disgusting. You knew something was wrong with her before you bought her into the world. It is your recessive genes that caused this. Also where is her father.Smh.🙄🙄🤔
Because of these videos, I set my Amazon Smile contributions to go to the RMRA. It's not much, but I hope it helps. I have a special friend who was born with a fairly severe level of Cerebral Palsy. Many of her symptoms are similar. I am hopeful a cure can be found for Rett Syndrome.
I just found this channel, and I am very happy that information on Rett Syndrome is being shared. I am currently a med student, and I am very interested in Neurogenetic research. I hope that one day I would make significant contribution to some neurogenetic study!
A beautiful child. However this educational video gave absolutely no insight into what Rett Syndrome is, sadly I have no knowledge of this disorde. I'm willing to learn all I can. In order for foundations to acquire and maintain/ obtain followers and supporters the info needs to be supplied. My whole heart goes to all who are in need .
