Mary is 47. We still count our blessings. She can swallow and enjoy the taste of her favorite foods, though she cannot chew. Now that her Dad retired, he takes great pride in preparing her healthy, tasty meals. All of them. Our youngest daughter Shelley, has helped tremendously with Marys care since she was about 16. Tragically we lost Shelley. Healthy, beautiful and strong. It was determined she had a seizure during the night and passed. She was only 37. A hidden heart defect we weren't aware of. My husband and I will celebrate 50 years together in August. I give you all this information because Rett is a family working together, holding on with hope, no matter what tomorrow brings. Love every moment you have together today......
I work with a woman who is in her 50s and she has Rett Syndrome. Even though she can not speak she fully understands what I ask or say to her. She is still walking, which is a blessing. She is the sweetest woman I know. Blessing to all who knows a girl with Rett!
My sister is a ret syndrome. she is very LOUD. you should be lucky that your daughter can walk and smile and you can afford what she needs. i want the best for my little sister, me and my family give what we can to brighten her life, we dont have no swings and awesome chairs for her. after this video i know that no rett is same.
Love from Canada for all Rett girls and their families. I work in Specialized Autism Services and we have a Rett's girl in our program and she has captured all our hearts! Stay strong families!
I really feel for these people, my granddaughter also has Retts. We just click together so well, she 13 now, she just had 2 seizures. I am very scared. I don't think I could go on without her, she's truly a ray of sunshine
I used to know several girls at Brook Run, a former institution-GRC-in Atlanta, who had Rett Syndrome. They too could still walk and wrung their hands and seemed autistic. My favourite, Denise, was very sweet and often hugged me. She could still feed herself and respond to her name.
Thank you so much for sharing this. My thoughts are with the families of those who suffer from this disorder. Keep on using that inner strength and showering them with love. All the best xo
Beautiful. just beautiful. As a mum of a girl with another non verbal disorder I love the poem from the little boy. Investing some of my hope in a cure for you also.
Trapped. That seems like the exact right word. I truly hope they are getting closer to finding a cure. I know there are medications that seem very promising…I hope they are making progress.
Actually seeing a child with Rett, and watching their actions and reactions says a lot more than just the explanation of the disease. I am just learning about it and have learned a lot so far but this video was especially poignant.
My daughter has Rett Syndrome. She is 45. We are lucky that she can walk and is in good health. She has a lovely personality and sense of humour but she she also suffers from depression and agitation. At these times she cries and screams and it can last for up to 5 days. We love her all the same.
I think they've had a great breakthrough for Retts syndrome their managing to reverse it in rats let's pray for all these Beautiful girls that it's going to be in time for them.
This is so touching. My brother had a daughter born with Cerebral Palsy. He is making a movie to give a voice to children like this. Check out A Story for Winter on facebook.
These are to very Beautiful girls, as a fellow parent with Rett you are very lucky that you daughters are walking & eating. I envy you. Hope this finds you all well. From Australia.
I work with a girl with rett syndrome, she´s 22 yrs old and was diagnozed when she was 5. She can say a couple of words, mama, papa. When she was younger she could alse say her brothers and sisters names.
Please let us know how we can help if the test comes back positive. The IRSF is a tremendous resource in helping families when they first receive the diagnosis.
I don't understand why governments don't help with research money, they get plenty of money in taxes I'm sure everybody would love to see their tax money spent on this disease.
My son has autism so I know how frustrating it feels. I think the above article gives hope for all our kids. Retts parents please google and read the article "Bone marrow transplant alleviates Rett symptoms in mice"- SFARI.org
+Darkraptor X It is a genetic malformation of the protein MECP2 on the X chromosome. This neurodevelopmental disorder has a genetic cause and affects only girls.
Actually Arben is not entirely correct. It is mostly found in girls, but is found in boys in rare instances. I won't overload you with references. A quick Google search can find plenty of resources discussing the occurrence of Rett syndrome in boys. The cause is also not that simple. It would take too long to explain here but 5% of girls with Retts don't have the mutation in the MECP2 gene. You can also have the mutation and not have Retts (patients in this category are referred to as having MECP2-related disorders).
Mary is 47. We still count our blessings. She can swallow and enjoy the taste of her favorite foods, though she cannot chew. Now that her Dad retired, he takes great pride in preparing her healthy, tasty meals. All of them. Our youngest daughter Shelley, has helped tremendously with Marys care since she was about 16. Tragically we lost Shelley. Healthy, beautiful and strong. It was determined she had a seizure during the night and passed. She was only 37. A hidden heart defect we weren't aware of. My husband and I will celebrate 50 years together in August. I give you all this information because Rett is a family working together, holding on with hope, no matter what tomorrow brings. Love every moment you have together today......
I work with a woman who is in her 50s and she has Rett Syndrome. Even though she can not speak she fully understands what I ask or say to her. She is still walking, which is a blessing. She is the sweetest woman I know. Blessing to all who knows a girl with Rett!
The brother's poem is beautiful! His words are so powerful. Great job.
Tears in my eyes. So much love. And the brothers poem❤️❤️❤️❤️❤️❤️
OMG the pain in those parents eyes, I pray for you all, beautiful silent princesses.
God bless all these Angels.. My 7 yr. old niece Valentina also has Rett....
My sister is a ret syndrome. she is very LOUD. you should be lucky that your daughter can walk and smile and you can afford what she needs. i want the best for my little sister, me and my family give what we can to brighten her life, we dont have no swings and awesome chairs for her.
after this video i know that no rett is same.
Love from Canada for all Rett girls and their families. I work in Specialized Autism Services and we have a Rett's girl in our program and she has captured all our hearts! Stay strong families!
The poem is beautiful! What a good brother he is to his sister =)
I really feel for these people, my granddaughter also has Retts. We just click together so well, she 13 now, she just had 2 seizures. I am very scared. I don't think I could go on without her, she's truly a ray of sunshine
Love how the dads talking about their daughters!!!
I have a little girl with retts so unbelievably hard god bless them pray for us
My sister has Rett syndrome. Goodluck with your your daughter, I am sure she is amazing and very beautiful.
+Chelsea! aww really ? thanks for your kind words and God bless her .. how old is she ?
She is ten. Thankyou so much.
I used to know several girls at Brook Run, a former institution-GRC-in Atlanta, who had Rett Syndrome. They too could still walk and wrung their hands and seemed autistic. My favourite, Denise, was very sweet and often hugged me. She could still feed herself and respond to her name.
That poem was beautiful.
this poem is great , and itgets it on the point.
Those brothers & sisters are amazing too.
Thank you so much for sharing this. My thoughts are with the families of those who suffer from this disorder. Keep on using that inner strength and showering them with love. All the best xo
Gorgeous giving siblings
Beautiful. just beautiful. As a mum of a girl with another non verbal disorder I love the poem from the little boy. Investing some of my hope in a cure for you also.
this is so beautiful and awe inspiring. i know this family and they are so brave.
Trapped. That seems like the exact right word. I truly hope they are getting closer to finding a cure. I know there are medications that seem very promising…I hope they are making progress.
My little sister Josie has Rhett syndrome it's sad she doesn't have friends and can't play pray for her
My sister has Rett syndrome.
+Chelsea! Well I pray for your sister to be safe and okay
+Caleb Smith Thankyou ;)
+Chelsea! No problem at all
Thatk you so much for sharing.
Anavex 2-73 just released pre-clinical Rhett results! There is hope!
Thank you I have not seen this research before
Actually seeing a child with Rett, and watching their actions and reactions says a lot more than just the explanation of the disease. I am just learning about it and have learned a lot so far but this video was especially poignant.
My daughter has Rett Syndrome. She is 45. We are lucky that she can walk and is in good health. She has a lovely personality and sense of humour but she she also suffers from depression and agitation. At these times she cries and screams and it can last for up to 5 days. We love her all the same.
I think they've had a great breakthrough for Retts syndrome their managing to reverse it in rats let's pray for all these Beautiful girls that it's going to be in time for them.
God Bless the girls!!!
what sweet families.
my sister have to Rett syndrome, Be courage ! (sorry i'm french )
congulation for your courage, keep the joi
Hope is near ♥️🇨🇦🌏
Hoping+ praying for the cure!
Donate to children’s disease research centres and help save children’s lives
I know a 37 yr old woman with Retts. She's the happiest woman I know :p
Beautiful girls!!
This is so touching. My brother had a daughter born with Cerebral Palsy. He is making a movie to give a voice to children like this. Check out A Story for Winter on facebook.
God bless you girls
they are awesome
These are to very Beautiful girls, as a fellow parent with Rett you are very lucky that you daughters are walking & eating. I envy you. Hope this finds you all well. From Australia.
My cousin has this and is now 17 but unlike these girls she does not seem like she is there or is thinking she seems a lot worse.
beautiful poem :)
They are beautiful kids! I love the poem
I work with a girl with rett syndrome, she´s 22 yrs old and was diagnozed when she was 5. She can say a couple of words, mama, papa. When she was younger she could alse say her brothers and sisters names.
Please let us know how we can help if the test comes back positive. The IRSF is a tremendous resource in helping families when they first receive the diagnosis.
I don't understand why governments don't help with research money, they get plenty of money in taxes I'm sure everybody would love to see their tax money spent on this disease.
💗💗💗🙏
My son has autism so I know how frustrating it feels. I think the above article gives hope for all our kids. Retts parents please google and read the article
"Bone marrow transplant alleviates Rett symptoms in mice"- SFARI.org
My neice has rett syndrome. She is 4 years old. She has 5 older sisters but it's still so hard.
There all beautiful
My sister has this I would like to start a group with other families going through this so please message me and id like to begin events and etc
My friend Kayla has Rett Syndrome also.
What is causing this illness?.. Also is this exclusive to girls?
+Darkraptor X It is a genetic malformation of the protein MECP2 on the X chromosome. This neurodevelopmental disorder has a genetic cause and affects only girls.
Actually Arben is not entirely correct. It is mostly found in girls, but is found in boys in rare instances. I won't overload you with references. A quick Google search can find plenty of resources discussing the occurrence of Rett syndrome in boys.
The cause is also not that simple. It would take too long to explain here but 5% of girls with Retts don't have the mutation in the MECP2 gene. You can also have the mutation and not have Retts (patients in this category are referred to as having MECP2-related disorders).
Rett Syndrome Boston Video
She'is cute
She'is cute