Amazing Myrnalise

Update: May 2024

Myrnalise was fortunate to get access to trikafta via her medical aid and the access program.

She continues to study hard and make the most of her life.

She no longer needs funding for her medication and we want to thank everyone in her family and social network who took hands with us and made this medication possible for her.

Her greatfulness is immense!

Update: 10 March 2024

After one month of Trixacar, my life has truly changed.

Except for physical changes, the mental and emotional changes have been remarkable.

My energy levels have improved, as I no longer physically exert myself by constant coughing. I’ve been able to get back into sports and pick up new hobbies, which I never had the physical capacity for.

I am now able to spend time with friends and not miss out on plans due to lack of energy.

I can’t remember when last I coughed – except for a mild flu – which usually turned into a lung infection and a hospital admission.

I feel stronger and lighter in life, as I’m not constantly physically and emotionally drained.

I now get to dance in the kitchen and attend class.

My baseline lung function started at 49%, it went up to 85%.

Along with the physical change, my sweat chloride changed from 126mmol/l to 49mmol/l.

I’ve gained muscle and weight.

I feel more alive than ever.

Thank you for your continued support and for making this medication sustainable for me.

Due to the instable economy in Argentina the price of 1 box of Trixacar increased with more than R65 000 and it currently costs R132,121.22 per box. 

Therefore we need to do various fundraising events to be able to afford this astronomical price increase. 

Without your generous donations this medication would not have been sustainable for me. 

I need to use this medication life long, otherwise my symptoms will return.

A heartfelt thank you to each of you who are supporting my cause and giving me extra breaths in life!

Original post

Cystic fibrosis is a life-altering genetic disease which primarily affects my respiratory and digestive system. Cystic Fibrosis has stolen a lot from me, but not who I am. 

And I want to keep on fighting. 

I urgently need access to Trikafta (Trixicar), a breakthrough life-changing medication that significantly improves lung function and overall health for those with CF, as its availability and affordability are vital for my well-being by addressing its root causes and offering the hope of a more normal and healthier life, preventing a future lung-transplant.  

At two weeks old, I was diagnosed, informing my parents that I’ll never have the quality of life they had hoped. Heart-crushing news didn’t falter their determination to provide the life they had promised me. I was a bundle of energy, constantly engaged in activities like gymnastics, athletics, and swimming. These pursuits weren’t just hobbies; they were my lifelines to staying fit and maintaining my lung capacity. However, even with all my determination and hard work, hospital stays and weeks of IV’s each year hindered me. I found it challenging to keep up with my friends.

This realization had a profound impact on me, but instead of it hindering my spirit, it fueled my determination. I refused to be defined by my limitations. I thrived academically and kept pushing forward, determined to defy the the odds. I knew one day I’d have to sustain my health financially. 

My passion for justice and advocating for those who had their health choices restricted led me to a clear path. I set my sights on becoming a lawyer, not just for the sake of a career but as a means to champion the rights and freedom of those who, like me, faced barriers to life-saving medications and treatments. I want to ensure that no one has to endure the financial hardship and emotional turmoil that I experienced.

My journey from a determined child to an aspiring lawyer is a testament to the power of perseverance and the unwavering commitment to making a difference in the lives of others. This is not just my story; it’s the story of a young soul who refused to be held back by circumstances and who aspires to create a world where everyone can exercise their health choices freely and without fear.

One box of Trixacar costs about R80 000 and if we can raise enough money to cover the cost of 2 boxes and flights to Argentina, we will be able to claim the money back from my medical aid and use those payments for the next batch of Trixacar. This medication needs to be taken chronically as it is not a cure but it is the most effective treatment for Cystic Fibrosis.

By making a donation of R200 per month – you can support my mission to make this life-saving medication sustainable for me.

Thank you for sharing my cause and know that every donation big or small does make a difference.