Claire Makenzie Siemon
Claire was born on a warm spring day in Portland, Oregon on April 29, 2004. Like many other Aicardi Syndrome cases, my pregnancy with Claire was perfect. All the pre-natal care and tests led us to believe that we were having a healthy baby. This was our second child, and unlike our first (son named Cole, born three years earlier), we wanted to be surprised until the birth to find out if we were having a boy or girl. After being self-convinced that we were having another boy, it was very exciting when the doctor announced, “It’s a Girl”! Suddenly we were flooded with everything pink and our hopes and dreams eagerly awaited the joys of raising a baby girl. Our family was complete.
Then one day, at approximately age 10 weeks, Claire made a weird movement. I didn’t think anything of it, other than maybe she had indigestion. It happened again the next day, and then increasingly the next, until after almost a week I knew something was not right. We had a chance to videotape one of her spasms and headed for the hospital. Over the next few days, tests confirmed that Claire had a full agenesis of the corpus callosum and other brain malformations, infantile spasms (seizures) and retinal lesions. She was diagnosed with Aicardi Syndrome. There was no immediate medical attention needed for Claire, her oxygen stats during her seizures were normal, but her prognosis was that she would be severely developmentally delayed and may never walk or talk. We were devastated and time stood still.
Slowly, reality began to sink in, and we realized that Aicardi Syndrome was something that we could accept and deal with. Our first task was to try to control her seizures. We tried ACTH, but knew within a week that it was not working for her. At this point she was having a seizure, lasting 10-15 minutes, every one to two hours. We next moved to a combination of Clonazepam and Topamax. Claire started to lose her smile and expression as the seizures became more controlled. At age one, we decided to wean her off the Clonazepam. She has developed so much better since and has been reunited with her smile and laughter. Claire continues to be on Topamax and her seizure activity is a range between three in one day to one every three days.
We have a great support group of family, friends, co-workers and medical professionals. Now at age two, Claire receives regular therapies through Early Intervention and our medical insurance. Her vision seems to be positive, however, she has many blind spots due to the retinal lesions. Claire is able to sit up with support around her hips and has great head control. She attends a mainstream daycare facility. Although she is with an age group that is younger, we feel it is appropriate based on her developmental ability. Watching other children captivates her.
Claire has an awesome relationship with her big brother, Cole, and lights up when he is around. We like to call her Claire-bear. She is so sweet and will be forever innocent. Claire is our living angel. We are so proud to be blessed with her!
09-21-2008
