Rett Syndrome Documentary Trailer

[hundredsand]

Thank goodness they know so much more about things than they used to! I work with a woman in her late 40s with Rett Syndrome, who spent well over half her life in an institution. Hope they find a cure soon for the condition.

[Kalevala87]

I can't believe Rett syndrome is still classified as an Autism spectrum disorder. I really hope they correct that blatant mistake in the next edition of the DSM.

[MandicMaja]

How old is this girl? I have a sister with rett sy and she can't walk, can't even sit. What medicines she is taking?

[314promo]

Nikki is 16 now. I'm not sure about her medication.

[jenntwix]

i love seeing the older girls that are walking and at school . my little rett angel is three now , and im praying daily for a cure! hoping that she will walk , talk , ride a horse ,feed herself , or even maybe have her own little girl one day!

[Donsshack]

Holly has classic RS and is now 33. She's been a quad for 20+ years. She's been g-tube fed for 10+ years. She gag-pukes from reflux. We've changed over 36,000 diapers. She's had many thousands of seziures. She's taken many gallons of meds, had many docs, tests, and therapies. She's been hospitalised hundreds of times. She's had many wheelchairs. My back hurts. I can't remember the last time she talked. She used to click her fingers. About all she can do now is cry, moan and especially smile. :)

[potaka79]

@Donsshack my daughter of 3yrs was just diagnosed 2 weeks ago but no one could tell us about what was going to be in 20 -30 yrs from now. does it get worse as the yrs go on or stay the same.

[sdsurf8469]

where can i see the whole documentary on retts?

[hauntedhogwarts85]

Ps..My sisters name is nikki also!!

[k8oleary]

my 24 yr old sister has rett syndrome too..its hard but the smile on her face every morning this that of an angel

[hauntedhogwarts85]

I also have a sister with Rett who is 21, and you hit it right, the smile she gives lights up the room. I am 22 and her caregiver, and I cant imagine me without her...

[lissiness]

My sister's smile was phenomenally beautiful and

angelic, too. She totally beamed love.

[spid33r]

it's not hereditary it's randomly. it affects MECP2 gene. especially girls they have a back'up X chromosome. :)

[emybobo]

shes 11 and she is doing the same as she always have just like ok she also has eye glasses allergies and sesires

[emybobo]

my sister has rett syndrome

[314promo]

How is old is she and how is she doing?

[Tory2005]

Rett Syndrome is NOT hereditary. It's genetic, but it's a random mutation. So everyone has the same chance of having a Rett child.

[polkadotpants]

I get what you're saying, though myself and my brother have aspergers, my son has moderate autism and my baby girl is thought to have Retts; since Rett Syndrome is a spectrum disorder, and spectrum disorders can run in families, doesn't that mean that families with several instances of autism are more likely to encounter Retts? I think I'm confusing myself...

[Rybot9000]

Rett Syndrome is hereditary and does skip generations. I feel for Nikki and I am interested in watching your documentary. Is it available online?

[314promo]

It isn't available online or on DVD yet... if you go to Nikki the documentary dot com and join the mailing list I can keep you posted. Right now we are submitting it to film festivals to start.

[trocaria]

I heard that it was not hereditary, that it was a once in a life time event for families. Have they changed their minds on this and finally realized that it does pass down in families?

[Rybot9000]

I heard it from Dr. Huda Zoghbi in the lecture series I posted. It may be a few years old. I don't know if its current.

[SuperDuckyWho]

It's hereditary. Very rare, but hereditary.

[Rybot9000]

The Howard Hughes Medical Institute (HHMI) did a lecture series called "Learning From Patients" where Dr. Huda Y. Zoghbi discusses her groundbreaking research into RETT Syndrome. hhmi dot org/biointeractive/neuroscienc­e/lectures.html

[ChristschoolClassics]

Making the comment like the one person did "it's what makes us human" is very dangerous.

[314promo]

How so?