On October 27, 1998, Samantha was born a healthy baby girl, weighing 7lbs4oz. When she was 7 months old and still not sitting up, her pediatrician suspected that something may be wrong. At the time, I wasn’t too concerned because Samantha was so alert and active and could roll anywhere to get a toy. We saw a neurologist in the Fall of 1999 and this is when I first heard the words “Rett Syndrome ‘, which was just one of the many disorders she was being tested for. I remember looking it up on the internet and thinking, “There is NO WAY Samantha has Rett Syndrome”. Accordingly, all the tests came back negative.
My world fell apart, in December of 2001, when Samantha was 3, and she had her first seizure. For the first time, I knew there was something really wrong. I also started noticing a regression period: no more words, stopped commando crawling, lethargic. We did another Rett Test and it still came back negative. Then in December 2003, I got a call from the Rett Clinic at Baylor that Samantha had tested positive for Rett syndrome with a new test they had just started using.
Today, Samantha is a 13-year old girl who has had many ups and downs. Although she doesn’t walk and is nonverbal, she is a happy girl who loves Barney, the computer, pizza, ice cream and the Back Street Boys. Although she has had many medical concerns, including multiple surgeries, and we still battle seizures, she is a blessing and I am so thankful she is in my life.