Claire Wiegand's Story: 1991 - 1992
At two, Claire's latest diagnosis was Cerebral Palsy. Claire began receiving inhome OT, PT and Speech Therapy (SLT) once a week from Noble Centers as part of their Early Intervention program. With two little ones 1 1/2 years apart, this made life much easier for me. She also joined Crossroad Rehabilitation Center's Lekotek program, where she worked with a play therapist once a month, then got to take home 5-6 special toys to borrow for a month. From her second birthday, Claire began to lose skills. She began to lose her pincer grasp. Her interest in toys started to fade. The two words she had were gone. She started to slip into her own world. By the age of 2 1/2, we knew something was very wrong. It was Claire's occupational therapist who first mentioned Rett Syndrome, when I asked if she knew of any disabilities besides autism that involved regression. I mentioned it to Claire's Lekotek play therapist, Jean McFerrin, who gave me all the information on Rett Syndrome she had. We later learned that she had begun to suspect Rett Syndrome, but didn't know how to tell us.
We read the information Jean gave us and we knew we had found the answer. We saw her neurologist, Dr. Bhuwan Garg, at Riley Hospital two days later. We watched as he measured the circumference of her head and asked us if she did a lot of handwringing. We knew what he was checking for. Because Rett Syndrome could not be determined by a single test, Claire had to go through more tests to rule out everything else. She had another MRI, an EEG, an EMG, blood tests, more urine tests, and more hearing tests. Her father and I cried, wrote a letter to our friends and family detailing the diagnosis, photographed Claire smiling for Winnie The Pooh (she no longer smiled at us), and hugged her. Within two months, she could no longer hug back. We joined the International Rett Syndrome Association (now the International Rett Syndrome Foundation), contacted other families, and I went to the IRSA conference in San Diego.
Copyright © Deborah Schilling/Thomas Bundy