I just told them that oxygen deprivation can be devastating. Not just immediately, but even worse in the long term. I don’t have a support system in my country. So I have to bear everything about my son’s care within my family.

When I finished talking, the whole meeting just went silent, silent. And then there was applause. I still remember vividly, and I think I will always remember. I’ve been a teacher all my working life – I wasn’t nervous. But that’s the first time I talked about my son publicly. And not at just any meeting: at a high level international WHO meeting.

I thought I'd end up in a Swiss sanitarium. It was brutally hard work. I could barely see my family.

every second I walked into the SABC meant a minute off of my oxygen tank

…it happened because I learned that I could speak through other people. I was a very shy child. I was an observer. I would sit and observe and listen and watch people's actions in order to understand what they were. I wanted to know what prompted them to say and do the things that they did. I sucked my fingers for 12 years. I never spoke ... but I was a great observer.