“96 percent of children are born healthy. My daughter is one of the other four percent.”
“When my daughter was a year old, we went to a friend’s garden party. His grandmother was there as well. When she saw my daughter, she cried out in shock: ‘I thought we could prevent that these days!’ I was too stunned to say anything. At the time, my daughter still had a feeding tube, had trouble drinking on her own, and was unable to sit or stand. She was born with a rare chromosomal defect, which in the bureaucratic language of healthcare providers is described as follows: deleterious structural anomaly, fully disabled, deaf-blind, in need of long-term care. Her dad and I, on the other hand, were the world’s proudest and happiest parents.”
