Nearly 15 years ago, my world turned upside down. I was four years old. While on holiday with my family, my parents noticed strange bruises all over my body and I started experiencing stubborn ear-aches – they took me straight to the doctor.
Nearly 15 years ago, my world turned upside down. I was four years old. While on holiday with my family, my parents noticed strange bruises all over my body and I started experiencing stubborn ear-aches – they took me straight to the doctor.
In 2007, my family’s worst fears were realised when I was diagnosed with a life-threatening disease called thalessemia – an incurable blood disorder. We learned that a blood stem cell transplant would be my best chance of survival.
When we started our search, we were not able to find a blood stem cell donor and my siblings were not a match. Thinking back, I can say we all gave up hope of finding a donor.
While waiting for a donor, I relied on blood transfusions every two weeks. As a result of the treatments, the veins in my hands collapsed and I had a port put in my chest. I also experienced constant fatigue. I had my gall-bladder and gall-stones removed and also suffered from an under-active thyroid.
In spite of all the challenges, I always remained positive and upbeat, always ready with a smile. Unlike most teenagers, I was frequently absent from school for medical reasons and could not take part in sports. Not being able to part-take in activities took a toll on me. Spending long periods of time in hospital was difficult as it came with a lot of restrictions and endless medications. However, family, friends, and my supporters were my life support during those difficult times.
My condition caused memory loss and seizures, and, without me realizing I was experiencing a seizure, this made it difficult to focus at school. To make matters worse, sometimes I would have a seizure while writing an exam. Eventually, I was forced to take more than three years from school.
Thankfully, after years of waiting, I finally found my match! The road stretched far ahead, but the discovery brought us hope.
During the transplant, the doctors found a scar on my brain causing the epilepsy – emotional epilepsy. The journey post-transplant also presented its own difficulties. After my transplant, I experienced extreme fatigue. I felt weak all the time, had nausea and was underweight.
In 2019, my mother found another doctor in Constantia. She sat outside his office for hours just to speak to him. After the conversation with my mother, and following a consultation, he discovered that I needed to see a brain surgeon.
The day of my surgery, I had to go to the hospital all by my myself due to covid-19 restrictions. It was overwhelming and I was scared but now when I look back I know it was something that I had to do for myself.
After four days, the hospital discharged me. Adjusting to being at home was difficult but I was just happy to be home around my family and not in a cold hospital room.
In a way, it has helped me become the person that I am today, and I would not have been here without it. I would love to meet my Polish donor one day to thank her for giving me a second chance at life.
One thing I have learned from my journey is to be grateful and appreciate the life I now have.
Three years post-transplant and now 19 years old, I am living a life I never thought possible. Thanks to the amazing act of humanity and kindness of my donor. I will be returning to my hobbies and will be attending school again in February 2021!