Heartbreaking.
My next door neighbor is going to soon to visit relatives, to help care with their infant. Certain tests during pregancy had indicated the high likelihood of the infant having a genetic derived illness - brittle bone disease - when it was born. They could not abort the child and it was born with the suspected problem. It is heartbreaking but the family is strong and pulling together.
People with the most severe forms of brittle bone disease may die during infancy. However, most people who receive supportive care and medical management can expect to lead healthy, productive lives with average life span.
There was a mother and daughter with brittle bone disease in my church. Both were normal and healthy, although fragile. They moved due to employment. I can’t imagine either of those lovely people being killed just because the are not “normal” -— are any of us, really???