These last few days have been some of the most difficult of my life, but they have been filled with such incredible warmth and love and support. I have never before wished so strongly for a better way to say “thank you.” I am so immensely grateful to the beautiful people that surround me, near and far, known and unknown. Any anxieties or reservations that I had about this website have completely disappeared, in the face of the outpouring of love that has followed. To all the people who shared this link on Facebook, to all the people who left me such supportive and empathetic comments, to those who sent me messages, you can have no idea of how much you have given me – by making me feel held and loved.

It’s a feeling I needed, for it’s been a rough week. My medication, Bosentan (Tracleer), ran out last Monday. After months of paperwork, we had finally managed to get Medical Control Council (MCC) approval to import a fresh batch of the generic from India. This supply – a year’s worth – was due to arrive on Tuesday, just in time for me to continue taking my meds uninterrupted.

We were anxious that it wouldn’t arrive in time, and so I weaned myself off my drugs, by taking half-doses for a couple days. This was a wise precaution, in retrospect, because Bosentan is a very strong drug and it is damaging to go off it abruptly.

My medication did arrive promptly. It just got stuck in customs. Many anxious days followed, where my incredible parents worked tirelessly for new approval documents. After about a week, the drugs were released, much to our relief. My family toasted their anticipated arrival with much excitement, for I was beginning to feel the effects of being off my medication.

However, once the package was opened by our importing pharmacists, it was discovered that the pills had been packaged and stored incorrectly and were not safe for me to take. I was pretty anxious and disappointed at this stage. It’s really not good for me in the long term to have periods where I am off my Bosentan. I’m sure my parents were more disappointed though. They had worked for months to import this drug. It has all now been scheduled to be destroyed, and there are no other pills in South Africa.

So we returned to square one, needing to source a place to import the drug from, and to get it approved, but now under more substantial time pressure. My parents decided not to risk importing the generic again, and focused on the real drug, Tracleer, which is very expensive. They have worked miracles and I await my drugs on Monday!

In the meanwhile, however, a wonderful miracle has come of this incident. Shani, an old friend of my mom’s, who she hasn’t seen for decades, found my website. This incredible woman has contacts in the pharmaceutical industry in America, where she now lives, and tracked mom’s cell number down to call and tell her that she is arranging for me to be sponsored by Actelion. All is not confirmed, but if this happens it will have a dramatic effect on our lives. It just shows the astounding power of networking and human generosity. There are some incredible people out there. Shani, wherever you are… thank you, from the bottom of my heart.

In the meanwhile I am very breathless and sore and tired, and my usually limited capacity for physical tasks has been halved, unfortunately. I have, however, spent many months like this before I was diagnosed, and so it’s not anything I can’t manage. It just sucks that I start my first matric exams tomorrow.

More importantly, however, this week has been emotionally tough. My beautiful, beloved cousin, who we call our “Warrior Princess,” has been fighting a rare form of cancer for about 3 years. Natalie is the most inspiring person that I have ever known. At the age of 13, she possesses more grace and wisdom than most adults, and her spirit and sparkling, wicked sense of humour live on despite incredible pain and discomfort. She does not have much time left with us.

Our family is a circle of love

We have spent this past week visiting her and her beautiful mom and brother. My aunt, Shirl, is the world’s most patient and compassionate nurse. To hear the love in my aunt’s voice when she talks to her children is enough to restore faith in all humanity. Nothing could ever be more powerful. She has created an intensely peaceful and tender space in their home and it is an honour to be part of the circle which surrounds her angel-daughter.

Here’s a lesson I’ve been forced into learning through this illness: