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Welcome to Living With Rett Syndrome

This page will always be under construction as unfortunately Rett syndrome is a "work in progress".

I am making these pages in the hope that a parent who has just received the diagnosis and those who have lived with it for a while will find some peace in their minds and hearts in the turmoil of this diagnosis for their child.

"I put my hand in yours and together we can do what we could never do alone.

No longer is there a sense of hopelessness.

No longer must we depend upon our own unsteady will power.

We are all together now, reaching out for power and strength greater than ours.

And as we join together, we find love and understanding beyond our wildest dreams."

-- Helen Keller--

(source: Internet quotations)

According to the International RETT Syndrome Association (IRSA) there are over 3000 reported cases of Rett in the world, with more than 2000 being in the United States.

Because we are a "small" group (unlike other Special Needs organizations), it's difficult to get funding and recognition for research and other areas which affect the lives of these girls/women.

My daughter, Dani was diagnosed with Rett when she was almost 11 years old.

Our Story with Rett Syndrome

to read about our journey with Rett.

"RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. While many health professionals may not be familiar with RS, it is a relatively frequent cause of neurological dysfunction in females. The prevalence rate in various countries is from 1:10,000 to 1:23,000 live female births."

--IRSA--

To Register Your Daughter With IRSA

Living with Rett syndrome is kind of like being on a roller coaster that never stops. It has it's ups and downs, the smooth but bumpy course, the twists and turns that somehow seem to come when you least expect them, and knock you back into the reality that your child is different from others, but that doesn't mean she can't learn and can't lead a full and impact-filled life.

Although Rett is a devastating disorder which robs our children of many of life's opportunities, you must never give up hope.

Rett primarily affects females, though there have been several reported cases of male Rett. To date I have not found any web sites regarding the males (though we do have several reported cases), and on the site map you'll find all the pages I've located and made on RETT.

The International RETT Syndrome Association has lots of helpful information you may want to check out. (you'll have to use your BACK browser to return here)

And my Site Map has tons of links that are very helpful.

Many parents blame themselves when they find out something is "wrong" with their child. I did this for many years until I finally came to the realization that there is NO one to blame.

It's just one of life's quirks, or part of God's plan for us to learn and grow. Once you can remove the guilt, you can begin to enjoy your daughter, and all she has to offer you and society as a whole. Dani has brought so many wonderful people into our lives that it's difficult to remember what our lives were like before her or Rett. She and all of the girls have a way of touching and softening the hardest of hearts.

Our girls have abilities which surpass our limited understanding of the universe as we know it. And I doubt seriously that in this life we will ever recognize just how very special they really are. I don't know that we're supposed to understand, but just accept them for the unique individuals that they are and for all of the graces that they have brought into our lives.

"That which does not destroy me makes me stronger."

-- Nietzsche --

I hope this page will help you understand Rett syndrome, help you find the resources you may need for your daughter, and lets you know, you are no longer alone. If ever I can be of any help to you on this road called Rett, please feel free to e-mail me at:

Connie Coughlin

Note: The contents of these pages are MY experiences with RETT,

and what has worked for my daughter.

GO to Site Map

This page was last updated: 5/4/99

Rsmother 1997-99 Connie Coughlin all rights reserved.


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