This is Sean. He is our beautiful son. My name is Nicki and I am the very proud mother of this 4 1/2-year-old. Sean has RTS. After 24 hours of labor, Sean was born by C-section. Right away, the doctors knew something was different about Sean. The biggest concern was the loud murmur they heard in his heart. I said a quick hello to him and then he was whisked away to a hospital an hour away. There it was determined that his heart was okay and he was not in danger. While at this hospital he saw a geneticist who mentioned RTS. A few months later it was confirmed. We knew nothing and quickly found out what little there was about RTS. However, we did not care, Sean was the happiest baby we could have dreamed of.

During his four years, Sean has suffered with numerous upper respiratory infections, undescended testicles, and many other doctor visits. He only eats pureed foods, except for Vienna Finger cookies, Mac-n-cheese, and peanut butter. Sean uses very basic forms of signs to communicate and we are in the process of teaching him how to use a communication board. Somehow he lets us know what he wants, most of the time that being Barney, Blue's Clues, or his music. Yes Sean is very musical. His first sign was to music, the first time he beared weight was to music and he falls asleep to music every night. This may be because Mommy and Daddy are both musicians. Sean also does not walk. He currently gets around well with a walker or by whoever volunteers to carry him.

While many days are trying, and our lives are not what we planned, Sean has been a blessing. I do not believe that you can fully experience life with out the gift of a special needs child. He has taught us so much and we learn more every day.

 

Contact: Nicole ReganNICREGAN@aol.com