A group that raises awareness about Trisomy 18 syndrome, a serious genetic condition, is planning to publish a book containing photos of children with the disease.
The photos, which have been gathered from about 300 families, provide an uplifting reflection of the lives of children with the condition caused by chromosome abnormalities.
Taichi Kishimoto, 33, who heads the "Team 18" group, recently celebrated his eldest daughter Misaki's sixth birthday on Dec. 22. Misaki has Trisomy 18 syndrome -- which makes it difficult to walk and talk -- but she is able to express a wide range of emotions. She also has friends at a day care center that she goes to twice a week, and gets on well with her three sisters.
Misaki's condition was discovered when she was still in the womb. Stillbirths are common for fetuses diagnosed with Trisomy 18 syndrome, and before Misaki was born, a doctor told Kishimoto, "Let's wait for the fetus to pass away in the womb."
Looking back at that time, Kishimoto recalls feeling that people's lives are differentiated, even though they are all lives.
As Kishimoto searched for more information about the condition at the same time as he helped raise his children, he found out about Team 18 and decided to join. He later became head of the group.
To date, there have been approximately 30 photo exhibitions of children with Trisomy 18 syndrome across the country. These exhibitions have been going for about 10 years, inspiring Team 18 to publish a book of photos marking a decade of activity. A total of 298 families responded to a call in November for two photos per family and a short message for the book -- much more than expected.
Suiyosha Inc. will publish the book, and an internet crowdfunding campaign has been set up to help raise the money required to print 3,000 copies.
Over the past decade, there has been an increase in new types of antenatal diagnosis that can detect congenital diseases in fetuses using the mother's blood. Kishimoto is not against this kind of diagnosis, but at the same time, he doesn't want people to think that "a serious disability equals unhappiness." He wants people to recognize the importance of life through reading the photo book.
The crowdfunding site for the book is: https://readyfor.jp/projects/team18-18trisomy.