Airbnb-stayed with a quietly amazing woman. Although she wouldn’t describe herself that way. 20 years ago her son, then aged 22, went for a job interview. He’d complained of toothache. She called him the day after; he sounded strange. Next day her other son called, hysterical, saying that the ambulance had arrived and his brother had just died. From “necrotizing fasciitis” – infection from the toothache had spread rapidly into his internal organs and gangrene had developed. Her distraught husband committed suicide shortly afterwards. And the remaining son suffered from PTSD after seeing his brother die.

The woman grieved. Then she set up an organization to promote understanding of NF. When I stayed with her, the phone rang regularly, emails were coming in and she was busy. For the last 20 years.