Lauren Messer

Lauren is a happy, smart, funny and loving little girl. My pregnancy with her was normal. There were some minor complications with her birth but after some quick work the doctors and nurses got things back on track. The next few months I was the happiest I had been in life, there were some hard times including the death of my Mother but having Lauren helped me get through it all. I could not believe that I was the Mother of this beautiful tiny little human being. I checked the books that tell you about milestones on a monthly basis and she was right on target and even ahead in some areas. Then that stopped. At about 6-8 months old I really started to get worried, she was not crawling, talking or walking.

I began taking Lauren to the doctor asking why wasn’t she doing what the books said she should be. The doctor assured me that she was probably fine. My family pushed me to see the obvious, to see what I didn’t want to see- SOMETHING WAS WRONG. Lauren didn’t really regress so much as she just stopped making progress. I pushed for more testing and took her to several different doctors but all the test came back normal and no one knew what was going on. When she was 18 months old, one doctor took a week to review her medical records. He called me at about 7pm on a Friday night and said he thought Lauren had Rett Syndrome. As he described Rett I started to cry, I tried to block out what he was telling me and focused on one thing, he only said he “thought” it could be Rett, there was still a chance he could be wrong!

My family started doing research on this thing called Rett Syndrome. I contacted the Blue Bird Clinic in Houston and continued taking Lauren to various doctors around town that had experience with Rett. No one would say for sure that she had Rett so I continued to hope that it was something else, something that could be cured. I began getting Lauren involved in early intervention programs, therapy and various other services. Shortly after the gene was discovered I had Lauren tested, we got the results- she tested positive for the R168x mutation. I cried again, I had never accepted that she had Rett and now I had to.

Now at the age of 6, Lauren has come a long way. She has continued to make progress, sometimes very slowly but progress nevertheless. While she has taken some steps on her own for the most part she is unable to walk independently. She is currently working on walking up steps with assistance and has been very successful. I always say that Lauren is not verbal but she is very vocal, you always know when she enters a room. We are trying several techniques such as PECs and Augmentative Communication devices to help her communicate. She has limited hand use but is able to do some things like play with toys (in her own way) her ability improves when she is highly motivated. Lauren suffers from seizures and reflux and takes medication to control both. She has a great personality, the cutest smile and the best laugh ever. She receives Occupational and Physical therapy, Speech Therapy, Horseback Riding, Music Therapy and Swimming. She likes music, watching T.V. (especially Veggie Tales videos), school and being in the water. I call her little Ms. Social Butterfly because she loves to be around people. She loves to learn and loves even more to show off what she’s learned.

While I hate Rett syndrome for what it has done to my baby, I would not trade Lauren for the world. I love her more than words can say, she is such a great person and she has had a positive affect on me, and pretty much everyone she meets. This experience has made me a better person, more appreciative of the little things, more patient but also more assertive when I need to be. I continue to pray that a cure for Rett will be found, sooner rather than later! With generous support and ongoing research this is a very real possibility. Until then I will continue to do my best to provide Lauren with what she needs to be the best that she can be. Her happiness is my number one priority, I try to help her experience life to the fullest. She has lots of friends, she likes going to places like Disneyland and stage shows like Sesame Street Live, she’s been skiing, and in the water with Dolphins in the Bahamas.

Some days are harder than others. I do get sad when I think about all the things that Lauren may not be able to do. When the seizures flare up or she stops eating for no apparent reason I could pull my hair out trying to figure out what to do. However, Lauren and I are very lucky to have the love and support of family and friends. The help and information I receive from other parents of children with disabilities, support groups and IRSA has allowed me to make my way through this maze a little easier. At the end of the day, one smile from Lauren lets me know everything is going to be okay.

Sherri and Lauren