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Daphni Jo 
Miss Daphni and her sister Lola dancing at Lola's birthday party!!!
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Rett Syndrome (RS) is a neurodevelopmental disorder believed to affect 1 in 10,000 female births (rarely seen in males). It is named for Dr. Andreas Rett, an Austrian physician who identified the syndrome in 1966, although it remained unknown in the United States until 1983.
Children with Rett Syndrome appear to develop normally until 6 to 18 months of age. They then enter a period of regression, losing speech and hand skills they had acquired. Most children develop seizures, repetitive hand movements, irregular breathing and motor-control problems. A slowing of the rate of head growth also becomes apparent. Most researchers agree that RS is a developmental disorder rather than a progressive, degenerative disorder. The girls can live to adulthood, but most never regain the ability to use their hands or to speak.
Cause:
In 1999, a research team identified the cause of Rett Syndrome as a defect in the MECP2 gene on the X chromosome. RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. Genetic testing is now available to confirm the diagnosis.
Not every child with RS displays all of the symptoms, and individual symptoms may vary in severity.
 
A VERY SPECIAL CHILD
A talk was held quite far from earth
"Its time again for another birth"
Said the angels to the lord above,
"This child will need much love.
Her progress may seem very slow,
Accomplishments she may not show,
And she will need much extra care
From all the folks she meets down there.
She may not run or laugh or play,
Her thoughts may seem far away.
In many ways she wont adapt
She will be known as "Special"
So, let's be careful where she's sent,
We want to make her life content.
Please, Lord, find parents who
Will do this special job for you.
They will not gather right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privilege given
In caring for this gift from Heaven.
This special child so meek and mild
IS HEAVEN'S VERY SPECIAL CHILD"
Edna Massionilla
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Cheerfulness from the bright colors, coming closer,
Sillyness in the heart, as the eyes cross,
Tickling on the tip of the nose, soft fluttering on the cheeks,
Waiting with a breath held,
Happiness inside as a butterfly lands upon her face,
Daphni
Author ~ Aunt Natasha ~
Journal
Tuesday, April 22, 2008 8:47 PM CDT Sooooooo... it's been awhile since I updated. Alot has gone on over the last few months. We have pulled Daphni out of school for the most part. She got so ill over the winter it set her back health wise. With being ill she also didn't have the energy to get up and move around. Which caused a huge issue with her walking. I believe we were very close to loosing it..... so after a trip to Childrens for Lola.. I asked the Dr. what he thought and he said get her into PT immediately..... so that's what we did. We just got a new aqua therapy pool here in our little town and Daphni is going twice a week for and hour each time. She get's so tired... but she absolutely loves it. We also got her Dr. to write a script for OT as well and have started working hard with her. So life is very busy around here....
Devin is still in scouts and is having a great time. Lola and I just finished a 6 week hula course and are waiting till fall to get back into the class.
Arlo has bounced back. It took awhile to get him in but he finaly did it. Got his colonoscopy and found out his Ulcerative Colitis had spread. The first medication didn't agree with him so they put him on prednizone.. and he is now weening himself off. Life has been somewhat crazy these days.... but getting excited for spring.
I have the makings of a fundraiser going... waithing for the snow to stop falling before we get started.... I will be posting pictures and tracking it on our myspace page. So stay tuned. Take care until next time...... Jerimarie
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Links: http://www.rettsyndrome.org
http://www.myspace.com/irbyfamily
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