3 minute read
Inspired To Live in Hope
“What are we going to do with all this future?"
On a misty Saturday night in a Swakopmund restaurant, surrounded by 100 other party-goers, I recently helped celebrate a very dear friend's 40th birthday. The evening was charged with joy. But this was more than a typical party. For Santi and her twin sister Marni, turning 40 wasn't just a milestone, but a miracle. They are among the. oldest living people with cystic fibrosis in Africa, and their story is one of resilience, hope, and, most recently, an unexpected new beginning.
I remember stumbling across a quote on the socials recently: “Time is the only currency you spend without ever knowing the balance.” For Santi, that truth has always been close to the bone. Growing up, she believed she knew her “balance,” understanding that her life, however full, might be painfully short. Doctors initially told her mother she might not make it past two years, then eight, and later that she might just see her twenties. Yet, here she was, celebrating her fortieth birthday, filled with gratitude and laughter.
The reason for this remarkable turnaround is something that sounds almost too good to be true: Trikafta. Introduced just a few years ago, Trikafta is a breakthrough treatment for cystic fibrosis – a genetic disease that traps thick, stubborn mucus in the lungs, pancreas, and other organs. For people with CF, daily life has meant an endless struggle for breath, a constant fear of infection, and gruelling treatment routines. Yet Trikafta changes that. By targeting the misfolded proteins that cause CF, it allows patients to purge their lungs of mucus and finally, miraculously, breathe with ease.
I wonder how differently we would approach life if we realised how lucky we are, if circumstances allow, to live in hope.
I will never forget the day Santi told us the good news – that she had been approved to receive this new miracle drug. It’s not a cure, but it’s the closest thing to a cure she’s ever known. Within days of starting Trikafta, patients’ lungs begin to clear out the thick mucus that’s suffocated them since birth. With each deep, cleansing breath, the future opens up in a way it never did before.
I’ve watched Santi reflect on what this means. She used to have to carefully plan her days around her treatments, IV antibiotics, and hospital visits. She would hibernate in the winter, avoid the rain, and rely on a cocktail of enzymes just to digest her food. Now, with Trikafta, she dreams of something as simple as running without gasping for air or even dancing in the rain, celebrating just like the rest of Namibia, without fearing for her lungs.
On a Friday in October, Santi sent me a WhatsApp photo, a radiant smile lighting up her face as she held her first dose of Trikafta. This article goes to print on the day of her and Marni’s 40th birthday. Happy birthday, Santi and Marni. May your future be filled with all the breaths you’ve yet to take.
I wonder how differently we would approach life if we realised how lucky we are, if circumstances allow, to live in hope. #Inspired.
