Samenvatting

Thirty years ago, in the summer of 1982, I was introduced to pediatric nursing during my internship in the Sophia Children’s Hospital, Academic Hospital Rotterdam (now Erasmus MC). One of my unforgettable patients was Dirk, a 24-year-old man with cystic fibrosis (CF), who spent his time in hospital in a small room with glass windows (called “the box”) where he could watch the toddlers play. At that time, he was our oldest CF-patient still alive. Even though Dirk was an adult, he wasn’t treated like one, and he certainly did not look like one with his small stature, his “chicken breast”, his swollen belly, and clubbed fingers. By the end of the summer, two of our CF-patients, Dirk and little Claudia (6 years old), were dead proving that CF was indeed a fatal disease.