REFILWE’S STORY – A Gift of Life


Living with a heart condition is not the easiest thing that a young girl can deal with, Truncus Arteriosis, a term I could hardly pronounce as a little girl, made up such a big part of my life’s journey. I had a very normal childhood, I have 3 amazing siblings and two very loving parents. I grew up just like any other child would or atleast I thought so, my family members used to always fuss about my health which I didn’t always understand why, until I started school.


My earliest memory of understanding that I had a rare heart condition was in Primary School, when I was given very strict instructions by my parents NOT to partake in any physically engaging activities at sports day. This was most probably one of the most exciting school weeks of our primary schooling, particularly if you were a pupil at Valhalla Primary School. A lot went into preparing for this day at our school, kids got to compete and get selected into their respective sports and coming together at the end of the day with your friends to find out who made it to which team, would be the highlight of the day. I remember sitting on the benches and watching all my friends take part, and everytime a teacher would approach me, I would produce a handwritten letter by either of my parents to explain that I had a heart condition that restricted me from doing physical activities.


This was the start of a very bright academic period for me, I became one of the top students in the school, usually being in the top 5 in the grade each year at Prize Giving. If I couldn’t prove myself on the sports field, surely I could find something that would cause me to also stand out and allow me to take pride in my work. I would like to believe that I am blessed with good genes, I have two very smart parents but I also believe my academic achievements have a lot to do with me trying to find my voice and convincing myself that I am not my limitations.

I remember not being able to trial for the netball team in grade 7 because this year unlike the past 4 years where I was Goal Keeper in every team I made it to, I could hardly make it around the netball court for warm ups. I knew something was not right. Even with the instructions from my doctors to avoid physical activities that would strain me, I still insisted on playing netball. I was always given the role of Goal Keeper because it required the least effort on the court, and this was good enough for me. 2003 was a particularly hard year for me, I was in grade 8 and I was barely coping. Our school was big and getting around the school to go to my next class had become a mission, I experienced a lot of breathlessness and also had frequent chestpains. I alerted my dad, who went on to inform my mother who was working overseas at the time, about these recent developments. Mom did not was any time, she immediately summoned us to Sunninghill Hospital where Professor Robin Kinsley was, the man who saved my life as an infant. Now as an adult I understand that she probably had been anticipating this moment for a while but was waiting to see how far the homograft would take me. We went and we were told I had 6 months to live, that I would not make it to Christmas Day of that year, and that I needed to be operated on immediately.


This started a whole national campaign where South Africans were donating funds to help the ‘Pretoria Heart Girl’ to be given a second chance in life. My parents could not afford this operation and we depended on strangers to chip in and help, I call that UBUNTU. People from all walks of life sent in messages of encouragement, and made donations to try and save a life of a girl they knew nothing about, this for me has to be the most humbling experience of my life. Explaining my condition to my peers at school was a big challenge though, as you know how blunt teenagers can be, I was posed with the occasional, “are you not afraid of dying” question every now and again. I was now known as ‘the girl with the heart problem’, it didn’t really bother me much as this was literally the story of my life. I learnt at a very tender age that we all have a story to tell, and our unique experiences are what God uses to bless and touch the lives of others.


Life after the second heart operation was reasonably normal, I was given a clean bill of health and was told that I could engage in most physical activities and the onus was on me to make sure that I don’t engage in anything that my heart cannot handle. I’ve defied the odds many times in my life, but the biggest achievement to date for me was giving birth to my daughter naturally. This is when I learnt to trust in my own strength, this experience taught me that I am capable of achieving way more than what I can fathom. My purpose on this earth is to bring hope to the hopeless. Having survived two near death experiences and God saving my life on both occasions, I have the boldness to testify that ALL THINGS ARE POSSIBLE THROUGH HIM. If I can encourage one mother with a sickly child or inspire one young person that whatever it is they are going through will not hinder them from achieving what it is that they hope to achieve, then I would have completed my work on this earth.


My wish for this book is that it lands on the laps of those people who are in search of a message that will propel them to believing, one more time. My parents could have given up on me when I was just a few weeks old and signed consent to have the doctors switch off my machines but they didn’t. They believed in the God that they prayed to every day, that He would see them through. If someone reads my story and is inspired to persist in whatever it is that they are believing in, then this book would have achieved it’s purpose.

“May your choices reflect your hopes, not your fears.” -Nelson Mandela