Morgan

by Cassie Jones and Darrin Hulse

Morgan was born on Jan. 24th, 2001. She was a beautiful baby and so well behaved. She rarely cried! We began to worry about Morgan the first year of her life. She just wasn't reaching the milestones that were in all the baby books. Her father and I were both told time after time that she was fine, though. By the age of 16 months we knew there was something wrong. She still couldn't pull herself up to standing. At that time, she began getting tested for everything. Eight long months later, when she was just over 2 years old we finally got the diagnosis of Smith-Magenis Syndrome. This brought mixed feelings to both of us. It was such a relief to have a diagnosis, and yet it was a heartbreaking diagnosis at the same time.

Morgan began receiving physical and occupational therapy when she was 16 months old. She tries harder to succeed than most people do. She amazes her therapists, teachers, and her parents with her determination.

Morgan is a true joy to everybody who comes in contact with her. She is the most loving, sweet child. She recently participated in a pre-school Christmas program and was so proud of herself as she sang the songs with the other children. She is truly loved by all of the teachers and the other children in her school. At school, we have all noticed that she does prefer adult attention.

Morgan spends time between her mom and her dad who both love her dearly. She has had problems with frustration and anger. When she is frustrated she will bang her head violently against the wall or slap herself in the face. It is devastating as parents to see the child you love so dearly injure herself in this manner. Learning sign-language and beginning speech therapy has helped her communicate better and it has helped to alleviate some of her frustrations.

We cannot imagine our lives without Morgan. There is something truly special about her. She loves life and can always put a smile on someone's face. She says hi to everybody she sees and when given a chance, will also give them a big hug.

We are so proud of Morgan. It isn't always easy to deal with the behavior that comes with SMS, but it is a unique experience that is a part of our lives. We wouldn't trade her for the world!