“Between the idea and the reality, between the motion and the act, falls the shadow” – T.S. Elliot
Adriaan van den Berg before his stem cell transplant. Adriaan was diagnosed with Fanconi Anemia in February 20082008 was a good year for most South-Africans, the Olympic Games, a new soccer coach, and the ever-growing anticipation leading up to the 2010 World Cup. Unfortunately, for one 8 year old boy, this was not the case.
Our family was struck by shocking news this year when our 8 year old son, Adriaan, was diagnosed with Fanconi Anaemia in February. This is a very rare genetic blood disorder that leads to bone marrow failure and makes the body more susceptible to diseases like leukaemia, skin and organ cancer. This is a bitter pill to swallow for anybody, imagine the effect it had on our family of 5.
Before the diagnosis, we lived a very normal suburban life. Adriaan was just a normal boy, playing, riding bike, swimming and enjoying his cricket. He had no prior problems with his health and it was just a routine check-up that led the doctors to this discovery. This really turned our lives around.
The oncologist, with exceptional knowledge and experience about FA (Fanconi Anaemia) informed us that Adriaan’s best chance was a bone marrow transplant. We dedicated ourselves to finding a donor for little Adriaan and the search began. With the chance of a match at 1:100 000 and only 63 000 registered donors in South-Africa, our hopes were not high. We felt that the life of our young boy was hanging in the balance with the chance of a donor at nearly naught. Then a miracle happened! We found a match in Adriaan’s 12 year old sister, Clarice. Our prayers were answered, and the next phase of our lifelong battle was about to commence.
On the 7th of July, Adriaan and his mother, Clarice, were admitted at the Faerie Glen hospital in Pretoria. They watched as the doors closed and knew that it would be more than a month before they saw the rest of the family. They had to remain in isolation to prevent Adriaan from contracting any illnesses or infections, as any discrepancy in his health could cause major setbacks or death. Adriaan started with chemo therapy on the 8th till the 14th of July and the stem cell transplant was performed on the 16th. They remained in isolation until the 1st of August before rejoining their family and loved ones.
The transplant was a huge success. Adriaan has taught us so much and through the faith of a child, hope and sheer determination, Adriaan has had a miraculous recovery. He will however have to fight against this dragon for the rest of his life.
There are many stories like this one with a not-so-happy ending. You can change that. With the help of donors we can overcome the dragon. Help us. Give someone a chance to live, a gift of life.
Clarice (aged 12) who was Adriaan’s donor and loving sister says that the harvesting was no problem at all. She says that all the attention was overwhelming and that she would do it over and over and over again, especially for her “boet”. Her stem cells were harvested on the 15th of July and Clarice was back at school to tell all her friends about her experiences on the 17th of July.
If anyone is interested in hearing more about stem cell transplants from a mother’s perspective, you are more than welcome to contact me through The Sunflower Fund. I would gladly share my experience in more detail with you.
Clarice van den Berg