I am Tanya, the mom of a CF warrior who is turning four this year. Janco was diagnosed at the age of two. There is no heel prick test done at birth in South Africa. We did not even know that cystic fibrosis (CF) existed. Janco was in three different hospitals over the course of three months before he got diagnosed.
We nearly lost him.
Janco has three older siblings and cystic fibrosis affects them as much as it affects myself and Janco’s dad, Jaco. Since Janco’s diagnosis nothing has been the same for any of us. We don’t go out visiting other people at their homes, when we go out to places and there is too much smoke or a lot of children or somebody just coughed or sneezed we will get up and leave. Janco’s siblings never invite their friends over because we are too scared that Janco might get sick.
When there is a family get together we always have to find out first if anyone is sick before we can see our family. We have to limit the hugs and kisses.
We are all fighting this battle in our own way. A part of each of us died the day when Janco got diagnosed. Other people are looking forward to their future but it is difficult for us to have that excitement because we know that lots of heartache and tears are waiting around the corner.
Cystic fibrosis is a very solitary disease and a very slow death. You cannot plan for the future because you just don’t know when CF will step in and win the battle.
Fighting this disease for your child every day is emotionally exhausting. Every night when you go to bed you doubt in yourself whether you have done enough for your child just to breathe another day.
There is now a drug available, that works at the root cause of cystic fibrosis. This drug is called Trikafta and in countries where it is available to patients, it is in the main having a very beneficial effect on overall health.
Here in South Africa however, Trikafta is not currently available to us. Although the engagement process with Vertex Pharmaceuticals (who make the drug) and a few key players in South Africa continues for access to Vertex's CFTR Modulator therapies (including Trikafta), the real concern for all of our South African CF warriors and their families still remains affordability.
Every time I look into Janco’s blue eyes, I feel ashamed and like a failure because we will never be able to afford Trikafta and potentially give Janco the best chance of a healthy life that he deserves. The drug will hopefully soon be licensed for younger children - but that is no help if it remains out of our reach.
It feels like somebody is tying my hands behind my back and forcing me to watch Janco while he is drowning. It is such a helpless and hopeless feeling.
It saddens me when a CF warrior gains their angel wings knowing that their life could possibly have been saved if only Trikafta was available globally. If only saving lives was more important than profit.
Through Janco’s illness I got a whole new family. I will fight with my global CF family until Trikafta is available for everyone
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HELP JANCO'S FAMILY TO MAKE THEIR VOICES HEARD:
Post your own selfies as shown below, writing CF awareness hashtags on your face/hands/body - hashtags include #globalcfdrugs4all #cfcantwait #Trikafta4all #vertexsaveus - SEE BLOG POST FOR FULL DETAILS: Join the fight for global access to CF drugs