Wednesday, October 18, 2006


I thought it would be fitting to start by giving everyone an introduction to our crew. Jessica is 24 yrs old and she has been a part of our family since the spring of 1999 6 months after Steve and I were married. She was 16 yrs old and we were blessed to have her be a part of our family. Jessica has what is known as Rett Syndrome - this is a neurological disorder which affects mainly girls as most boys often die from complications either prior to birth or shortly thereafter. Jessica is very fortunate that she remains healthy and is still able to walk and eat without the need of a feeding tube. Which is great cause she LOVES to eat despite the fact that it is hard to maintain her weight.

As you may notice in the photo Jessica's hands are in a wringing motion which is a classsic symbol for Rett Syndrome. October is Rett Syndrome Awareness Month and I challenge everyone to visit the IRSA website to learn more about this disease. There are ways that you can help find a cure so that other girls might not suffer from its affects. Keep in mind Jess is soooo spoiled and we would not have it any other way. If you visit the website you can make purchases on amazon or book any travel plans for example through travelocity and other discount providers. A percentage of you purchase can help support IRSA to find a cure. The gene mutation has been discovered now we just have to find a cure. These girls are known as silent angels as they are unable to speak. Consider yourself touched by an angel today and say a prayer that we might put an end to Rett Syndrome. But I do ask that you not feel sorry for Jess and she is blessed and has made our life such a blessing. We could not imagine our life without her.

Timothy loves to feed "his sister" and even pipes up to order a salad for her when we go in the McDonald's drive thru. Today I caught him dancing for her to make her smile and it worked. Claire loves to feed Jess popcorn and any other thing she thinks she should share. Jess is the oldest in our crew and I will tell more tomorrow. Wow two posts in one day!


At 3:54 PM, Blogger John said...

Thanks for making me more aware of Rett Syndrome...

At 11:41 PM, Blogger Doris said...

Hi! I'm Doris and my little girl Edda (2yo) has Rett. I always love hearing about older girls who are doing well. I love it! I can't wait to read about the rest of your crew :)

At 3:23 AM, Blogger Janice (5 Minutes for Mom) said...

you have a wonderful family - that is for sure!!


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