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Mom Confessions Mom Confessions

Oh yeah, I'm going there...

Posted by on Oct. 7, 2013 at 11:41 PM
  • 64 Replies
12 moms liked this

I'm doing it again, because it's that time of the year again.

October is the awareness month for many things, and one of them, is Rett Syndrome. Before we go any farther, take a look at this adorable little girl of mine who lives with the effects of Rett every day.

Another one? Okay, if you insist!

Now that we have that out of the way, I'm going to explain Rett Syndrome for those of you who haven't seen my posts before. If you do not care, stop reading here, and make sure to reply, and tell me just how much you don't care; I like free bumps. <3

Rett Syndrome is caused by a mutation in the X chromosome, and is completely random. It can happen in any family, and does not discriminate based upon race or nationality. It is most often caused by a mutation in a single sperm.

Because it is an X related disorder, and most often comes from the sperm, it predominantly affects girls. Boys who are affected rarely live beyond their first birthday.

Girls with Rett Syndrome are born appearing perfectly healthy. They learn to talk, many learn to walk, and everything seems fine. Then, when they are 6-18 months old, things begin to change.

They lose their words, ability to control their hands, begin to have seizures, and some lose the ability to walk.

50% cannot walk

99% have no speech.

80% have seizures

80% develop scoliosis.

Unfortunately, there is also a shortened life span.

They depend upon their parents/caregivers for full care in every aspect of life, from feeding to diaper changes.

Despite all of this, Rett parents remain hopeful. Scientists have made great strides, and have even reversed symptoms in mice. We hope that one day, we'll be able to hear our little ones talk again, and no longer watch them suffer from seizures, breathing issues, frequent pneumonia, and a myriad of other health issues.

For more information, you can visit

www.rettsyndrome.org

or

www.girlpower2cure.org

or, watch this video I had made about my daughter four years ago. I'm aware of the glitch in the video (it's new), and of my one typo.

And if you want to see her in action... here she is, deliriously happy, on the way home from the dentist.



"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

by on Oct. 7, 2013 at 11:41 PM
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Replies (1-10):
Danapopcorn
by AbbyCat on Oct. 7, 2013 at 11:48 PM

bump!

twinners.mama
by Gold Member on Oct. 7, 2013 at 11:51 PM
3 moms liked this
She's beautiful. You are a very strong mother.
karlie2
by Silver Member on Oct. 7, 2013 at 11:52 PM
Beautiful girl :)
mlg1989
by ZombieMegg on Oct. 7, 2013 at 11:53 PM
Aww. Cute :)


bump
LucyMom08
by BS Intolerant on Oct. 7, 2013 at 11:53 PM
2 moms liked this
Bump for awareness :)

She's beautiful...I love the pic on.the blue mat, she looks adorable :)
Posted on CafeMom Mobile
midnightmooncom
by on Oct. 7, 2013 at 11:55 PM
2 moms liked this
Ur one strong beutiful mama !
MommyKarma
by on Oct. 7, 2013 at 11:55 PM

I can't watch the vids right now, but thanks for the awareness post. I love reading these things and posting them too.

Questions. When did you notice things going bad for your DD + find out what it was. How did you feel about it then vs. now. What is the average lifespan for persons with this and so it literally is just girls who live with it? =/

How old is your DD and what is her day to day life like? What is her name? :)

TrouserMouse
by on Oct. 7, 2013 at 11:55 PM
I look forward to this every year. :)
The.Last.Rebel
by Platinum Member on Oct. 7, 2013 at 11:56 PM

I love you and you're awesome! Your daughter is also awesome, and so cute!

Momniscient
by Ruby Member on Oct. 7, 2013 at 11:57 PM
Bump for awareness
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