Hi, welcome to my blog! Let me introduce myself...

resilient, joyful and stubborn.

Wow, its difficult to describe oneself in three words. I feel like I am a whole bundle of words, but if anything I am a joyful fighter who grabs life with both hands while eagerly writing my own story and continuously finding new limits

I was born in the year 2000, and raised in Stellenbosch, South Africa where I have lived ever since. I have an older sister, who is a year older than me and I consider her to be my partner in crime. Besides a few physio sessions, nebulizations and a hand full of medication, I live a completely normal life. I am currently completing my Master's degree in engineering, I run with clubs and friends on a daily basis, I love hiking, consider myself to be part of the Stellenbosch-coffee snobs, and am planning to get married to my best friend in September 2023.

However, life has not always been this simple and easy...

At just 3 months old, I was diagnosed with Cystic Fibrosis. My parents had noticed that despite drinking a lot of milk, I wasn't gaining weight as a baby. I was often crying and had runny, oily stools due to CF affecting my digestive system. However, once I received the proper medication, my parents were relieved. Unfortunately, their relief was short-lived when the doctor told them that I may not live past the age of 10...

Despite the bleak prognosis given to me, my parents refused to let it dictate my life. They had faith that I would be an exception and that a cure for Cystic Fibrosis would soon be developed. Their positivity and exceptional parenting set me up for success. Even though my medical bills were a significant financial burden, they found ways to keep me going strong with the help of donations from family and friends. They also fought for new medicines to be available in South Africa and organized fundraisers. While all of this was going on behind the scenes, I was living my best life, blissfully unaware of the struggles my parents faced. I excelled in sports from a young age, representing Boland at the South African gymnastics competition when I was just 10 years old. My mother made sure I developed a passion for sports and strategically encouraged me to learn the flute at age 7. During high school, I had the opportunity to compete in regional hockey and tennis tournaments.

I adhered to a strict routine to manage my CF. I woke up an hour earlier than everyone else to complete physio and nebulizations. After school, I ran home to do another hour of physio to clear my lungs before heading to hockey practice. Despite coughing throughout the day, no one around me ever questioned my condition. Coughing fits were commonplace on the field, but I never let it hold me back.

At 16, I became a certified lifeguard and completed the 7-day challenge with ease. Although I started every morning with a physio session in a stranger's car or house to avoid the embarrassment of clearing mucus from my lungs, I was able to run 21+km, jump off cliffs, and swim in the currents of Onrus with ease. Life seemed easy, and skipping a physio session here or there didn't seem to make much of a difference.

Eventually, my lungs began to weaken, and while this decline may have taken place over several years, to me it felt sudden and alarming. For the first time, I felt limited and abnormal. I realized that I coughed far more frequently than anyone else, and that others seemed stronger, faster, and more energetic than me. Days seemed shorter for me, given the amount of therapy I had to do, and visiting the doctor every three months was not as normal as I had thought. My lung function hit an all-time low of 71%, and I had to face the harsh reality of what it meant to live with this disease.

Hospital visits became more frequent, and running more than 5km was now out of reach for me. Studying for exams meant sitting with my AfloVest and a bowl of mucus by my side, which had become the norm. I became acutely aware of when my next coughing-fit would occur, and using the bathroom in a university residence was a nightmare, given my regular stomach problems. Despite my fears, I remained determined that CF would not define or limit my life in any way.

And then, one day, there was Trikafta.

What seemed to be impossible, was now possible. For the first time, CF patients in America was seeing an improvement in lung capacity and lung function. People who were on a lung transplant list, was now able to walk without oxygen. Those who could only walk a mile, could now run a mile. Trikafta was the first sign of hope and meant someone with CF could live a normal life.

The catch? You had to live in either the US, UK, Ireland, Austria, Denmark, Germany or Slovenia.

The experience of watching my lungs weaken month after month was accompanied by a feeling of being left behind. It was incredibly difficult to witness the gradual deterioration of my health, while knowing that a solution existed but was unattainable due to the exorbitant price that Vertex Pharma was charging for Trikafta. I found myself constantly asking my doctor how we could halt the deterioration, only to be met with discouragement and a sense of helplessness. This is a shared experience among thousands of CF patients and their families who are left feeling as though a new lease on life is promised but just out of reach. Unfortunately, the longer we wait, the more our lungs are damaged by age and infections, further compounding the challenge.

In 2021, a glimmer of hope was kindled in the CF community with the release of a generic version of Trikafta, named Trixacar, in Argentina. Although still beyond the financial means of many, costing over R60,000 per month at that time and climbing rapidly due to the economic state of the country, it was the only alternative that might be within reach for South Africans and others in similar circumstances. However, Vertex Pharma has refused to sign over patent laws, preventing the distribution of the generic. Despite this setback, CF mothers are known to be fierce advocates for their children's health, refusing to accept defeat no matter the odds. My own mother is such a fighter, a lioness who never backs down from a challenge.

Despite the financial obstacles and occasional scarcity of work for my dad, my family and I were determined to find a way to afford Trixacar. With the help of our savings and generous family members who understood our struggle, we managed to purchase my first box of Trixacar in March 2022. I cannot fully express the mix of emotions I felt at that moment - nervousness, excitement, amazement, and fear all swirled inside me. Finally, I was on the cusp of a new life, one free of limitations, coughing fits, and the constant burden of CF. No more life sentence.

How do you thank someone, who gives up their comfort and sacrifices their financial security to provide you with a full and limitless life?

With the help of family members who understood our struggles, we were able to gather enough funds to purchase halve a year's supply of Trixacar in March 2022. We knew that this wasn't a sustainable solution, but we held onto hope that Vertex Pharma would realize the severity of the situation and the impact their greed was having on CF patients. Our hope was that they would reconsider their patent laws and allow for the generic to be distributed to those in need. To this day, this has not been done. But until then, we know that we would have to raise enough money to purchase one more batch of medication. We keep on telling ourselves that we need just one more before things might get easier. Our goal was to raise enough funds to make one more trip to Argentina and bring back a 5-month supply. We had faith that the situation would improve, that the patent laws would be lifted or that a third world country like ours would be deemed important enough to receive the medication at an affordable price.

Seeing my new lung function, of 112%, exceeded all my expectations. How, through all the infections, all the scares, all the times I decided to skip physio because I was just too tired... did I manage to look after my lungs this well? I don't know about you, but this is a miracle I can only thank God for. The first time I started running again, it felt like I couldn't stop. I was running 5km, 10km, and within a few months I found myself signing up for my first half-marathon. Less mucus meant less physio, less infections, less complications and hospital visits and new limits. As you maybe realised by now, I really love running now...

Oh, how I love discovering what my body now capable of. How can it be, that living is this easy?

BBT is my hope in funding just one more box of Trixacar... Just one more batch of medication. Partner with me in trusting that I will need just one more, and that going back to my previous way of living is not an option.