6-15-83 ~ 4-21-02
CS - 2
- What caused CS to be suspected? At age 1 year 10 months, because her speech development was delayed andshe was unstable in walking, she started being seen at the outpatient clinic of the Central Hospital of Aichi Prefectural Colony for the Handicapped. At first she was seen by the Pediatric Psychiatry and Orthopedic Surgery departments. When she was 3 her Orthopedic doctor said "Isn't this Cockaye Syndrome?" and introduced us to a Pediatricianspecializing in genetic problems. Shortly after that, a skin sample wastaken and cultured and then tested for response to sunlight. That test was done at Mie University. I think it was 2 to 3 months before we got the results, but we were told "There doesn't seem to be any real.
- What schooling?
from 1 year 11 months to 4 years 9 months - Kasugai City Kibonoie (Houseof Hope) (This is a
facility where the mother and child attend together.)4 years 10 months to 6 years 9 months - Kasugai City Iwakidai Nursery School (handicapped class) 6 years 10 months to 18 years 9 months - Aichi Prefectural Komaki Special Education School, Elementary, Middle, and High School Departments.
What was the final hospitalization?
from February 4, 2002 to April 21, 2002. She was hospitalized becauseher swallowing of solids and liquids got bad and her food intake was reduced. The final cause of death was respiratory failure.
When CS was diagnosed, we received an explanation of the nature of thesyndrome.
Progressive - when I heard that her abilities would disappear one byone, everything went black before my eyes and I felt like my heart was being crushed with fear. "No matter what I do, whatever..." And I really felt like giving up. But then the doctor's words gave me hope. "If you as a mother will take an active part, you can relax the curve of progression."Speech training (from age 3), physical therapy (from age 3), occupational therapy (age 6 to 10), vision training (from age 13), speech therapy at the Health Center (age 7 to 12), psychological therapy (from age 2), muscle relaxation training (from age 12). In the speech therapy at the Health Center they taught her the Makaton (?) Method, and later her school teacher taught her sign language. Whatever the training, relationships of trust were built, and I feel that even though it was called training, for Yumi it was an opportunity to meet and get to know people.She was able to meet many people and through many experiences she showedus many smiles, many tears, many times of anger, and many other faces. I think she lived her 19 years to the full