Reece Smit

I was diagnosed with Fanconi Anaemia (FA) when I was five years old and received a bone marrow transplant at age ten. I got graft-versus-host-disease (GVHD) the same week of my transplant and it was a tough three years of recovery. It was a very difficult time not only for me but my parents and friends as well. It is a lot of financial pressure for parents and as a young person you miss out on a lot like time with friends and school. I definitely had to grow up quicker than my friends because spending so much time in hospital and all of this, forces you to become tougher. 

The positive side is that you see life through different lenses and things like money and possessions cannot compare to health and enjoying life. Living with a rare disease can be isolating and emotionally challenging, but I have a strong support system and the best medical help. We live in Jeffreys Bay and the medical team we work with is in Cape Town, so it is challenging to travel so far for check-ups. I do have a great local GP that’s been a great support. The past few years I have been blessed with great health. My blood counts are great and I feel good!

I try not to think too much about FA but rather focus on living life to the fullest. I am a very adventurous person, and surf and ride skateboard daily. Self-care is crucial for coping. Making time to do things that I like relaxes me, like listening to and creating music helps me. I choose to focus on things that I can control like being active and living a healthy lifestyle. I know that alcohol and smoking is a big no for people with FA as we are more prone to cancer so I choose to not do that. I don’t want to worry about things that are out of my control and rather enjoy life.

My advice to other parents and young people living with FA is to stay positive. Yes, there will be tough times, especially if you have to do a transplant or go for transfusions but that too will pass and there will be good times again. It is very easy to fall into depression but there is always help. Our family motto is “Life does not have to be perfect, to be WONDERFUL!”