Janco's story

My name is Tanya and I am Janco Koorts’ mum - we live in South Africa. Janco was diagnosed with cystic fibrosis (CF) at the age of 2.

Janco is at the age now where he is starting to realise he's a bit different. He will ask questions like why is he the only one that's coughing at school? Why is he the only one who has to take pills with his lunch? Why does he have to go see the doctor so often?

Cystic fibrosis affects a lot of people, not just the patient. It affects the siblings and it affects the grandparents, when you have to limit the number of hugs and kisses. It affects the teachers at school who have to be more aware of CF and more careful in class. It affects the friends, because CF patients can't just go out and do whatever they want. When friends come to visit Janco they have to sit with him whilst he's getting his treatment and his physio.

And it affects the parents most definitely - it affects us emotionally and financially. Every day is a battle. You fight every day, just so that your child can breathe one more day.

Janco does not have access to lifesaving CF drugs. It makes me feel sad - it makes me feel like a failure as a mum. It feels like Janco is in front of me and he's drowning, and someone’s tied my hands behind my back and I have to look at my child and say that I can’t save him.

It makes me angry that Vertex can decide who gets to live and who will die. I think they are heartless people and sometimes I wonder how they sleep at night knowing that people are losing their loved ones.

I urge people to support the campaign for global access to these lifesaving drugs. The more awareness we can create, the more pressure Vertex will feel. Together we can save lives.