I’d like to tell you about a journey that changed my life forever. As I imagine is the case for so many, I have had an interesting experience with Fanconi anemia so far. Although there are plenty of challenges that came with the diagnosis, I believe it has changed my life for the better. FA has taught me a couple of life lessons that you would expect to hear from a man late in his 90s, like: take everything in, and appreciate every smile, moment of laughter, and every single sunset. Even more, appreciate being able to get up in the morning and take a breath.

I have to be honest, there have been dark times my friends, very dark indeed. I think anyone who has experienced the uncontrollable feeling of actually hoping to die by the next morning would agree that FA is not all about beautiful, mind-altering moments. No, like everything else in life, sometimes it is just plain depressing. That said, we try to focus our horizons on the good stuff, and that’s what makes it bearable.

Robin and Jolandie

My wife, Jolandie, and I had a pretty good thing going back in our hometown of Mbombela, South Africa. By age 25, I had successfully owned and operated two reputable businesses, had a lovely home, and plenty of people we called friends. We spent our weekends isolated in the bush, but worked extremely hard at chasing money and a sense of accomplishment during the week. We’re a great team, and we spend every single hour of every day together.

Life was going well. Then, headaches and a racing heartbeat called for some concern. I went to get my blood pressure checked, and my life was never the same again. Government hospitals in South Africa are on another level (basement level, if you ask us) and we have plenty of stories to tell. I have had six bone marrow biopsies to date, four of which were done by students getting their practice in. It’s not hard to believe that we struggled significantly with finding out what was wrong with me. Finally, I was referred to Groote Schuur Hospital in Cape Town. This saved my life!

I received a double diagnosis: myelodysplastic syndrome (preleukemia), and Fanconi anemia. What?! ‘Yes sir, you will have to close up shop in Mbombela, and be in Cape Town for treatment by yesterday!’ Our research into FA was frightening, to say the least, but explained quite a few things in terms of my life and body. My mother passed away in her 30s, as did her father. The diagnosis cleared up some of these questions.

We did what we needed to do, and I booked my bone marrow transplant (my sister was a 50% match). We spent a terrible five months in an isolation room. Graft-versus-host disease was my next competitor, and it almost won a couple of times. It’s still in the fight, but we’re beating it down one day at a time. When I was discharged from the hospital, I could not walk, and I was wearing adult diapers. I did not have the strength to unlock a door, and I was getting fed through a tube in my arm. God blessed me with a wife who pulled me up from the pits of darkness. She bathed me in bed, slept on the floor next to me, and gave up the chance of one day becoming a mother. Wait, as I write this, I’m tearing up. Let me take this to the good side of things.

Numinous Expeditions

Let’s take it back to 2017. Jolandie and I had this dream of one day retiring and driving across the world. We also enjoyed helping others in our daily lives. It just felt like we were destined to do so. One evening I was sitting on a hospital bed, and the doctors were looking very worried about what they were seeing in my blood tests. They had not given me any diagnosis yet. I was alone, and I had just helped another patient with a minor problem.

Something came over me and I closed my eyes and proceeded to make God a promise. I said: “God, if you would give me 10 more years, I’ll make it count. I’ll do what is right: fight for those who can’t, protect the things that need protection, open my heart to others, and help where I’m needed.” I vowed not to chase money or success, but to focus on the things that really matter. A while after that, I got diagnosed with FA. They told me that if I were to survive the transplant, my life expectancy would be 35. I was 25 on the evening that I asked for my 10 years. Enough said. Numinous Expeditions was born.

We jumped into action and built a camper on the back of my work truck. We rushed to get it done before treatment started, worked straight through the last night, and left for Cape Town for treatment the next day. The plan was to drive around South Africa and help anything and everything that we agreed needed the help. 

We did our first major animal project two weeks after I was discharged from the hospital. We drove 2000 kilometers assisting animal shelters and sanctuaries in any way they needed. We decided that we wanted to make a bigger impact, and the idea of doing a global expedition grew quickly. We managed to purchase an old Mercedes truck that we are currently busy re-building into a home on wheels for our global trip starting with the African continent. Our goal is to do one major humanitarian, environmental, or animal welfare project in every country we reach.

We don’t necessarily look for projects. They just seem to find us. We motivate other bone marrow transplant patients to win the fight in the isolation ward in Groote Schuur hospital, and have just started working on our next project. Five individual artists will be filling the isolation rooms with color and creativity, and hopefully, it will make a difference in the mental state of patients booked into the ward. We plan on funding our living costs from hand-crafted jewelry that we make from our home on wheels.

I will do everything in my power to succeed in making a lasting impact wherever I go and better the lives and wellbeing of others. I aspire to inspire other FA warriors to fight the good fight, and succeed in whatever they put their minds to, because nothing is impossible!

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