Sierra's battle with Rett Syndrome

Sierra just turned 5 so I thought I would create this montage to document her struggle with Rett Syndrome. She is the sweetest little girl and has brought us so much joy! Please spread the word about Rett Syndrome!

Category:

Nonprofits & Activism

Tags:

• cerebral
• hypotonia
• OneTrueMedia
• palsy
• rett
• syndrome

[tychi87]

i am studying this in school now and i came across your vid cause i wanted to see how the syndrome really is and not just read about it...You are very brave and strong for doing this and may God continue to bless you and your family especially Sierra....it's been a few years now since this vid...if you don't mind me asking...how is she now?

[laineyful]

@tychi87 Thanks so much for your comments, and nice to know they are teaching about this in school! Sierra is doing great, progressing well and mostly healthy. We have high hopes that a cure is near. Thanks for asking :)

[Sheri451]

I take care of a little girl who's Mother is an in home care nurse, She and three others take care of a 15-year old named Maria with Rett, this child has had 18 seizures since last May. She can neither walk not talk.They try to take ger to school a few times a week, but when she arrives they give her babies work to do, it frustrates her and if they don't take her home, she will get so upset she'll have a seizure. They can't turn on the television or play music because it gets her upset.

[laineyful]

@Sheri451 Sheri, I had the same problem with Sierra's last school district. They thought she was cognitively only 9 months. In fact she is quite smart, smarter than her age, can read and do other age appropriate skills. I had to pull her out and homeschool her because she would just shut down at school. Treating a child with normal intelligence like an infant is abuse in my opinion. Sierra was very depressed at school. No signs of that now.

[gloriass777]

Does anyone know why Rett Syndrome only targets girls?

[laineyful]

@gloriass777 It does not only target girls, it affects boys also just that it is mostly fatal in boys. Most die b4 birth or first year and parents never know they died of Rett. Its fatal in boys because girls have the extra x chromosone to keep them alive. I know there are at least 5 boys who are living though, some because they have an extra x chromosone.

[Sheri451]

@laineyful I don't know if Maria's parents can do that. But the woman, who's little girl I care for used to teach at the school Maria goes to now. I think they have to pass a test in my state North Carolina, before they can homeschool a child.

[Sheri451]

Maria had been taken to numerous doctors and has been given numerous meds to control the seizures. She is very tiny for her age, I've saw pictures of her. She is very pretty like your daughter, but looks about nine years old.

[gloriass777]

Your poor baby. She is beautiful. She truly is an angel. <3 All my blessings go to her.

Are the doctors doing anything to reverse the symptoms?

[Mattydaddy1985]

@janineaaaaaaa Proof? I have a daughter with Rett and haven't found any support to the idea that technology is the cause. Please dont inject some personal opinion as fact.