Chris used to think the fact he got blood from other people was ‘dirty’. But not any longer. ‘I am glad that there are people I can get blood from. Otherwise I would be even sicker now.’
Chris was born with the most severe form of the blood disease sickle cell anaemia. This hereditary disease is fairly rare in the Netherlands, and is mostly found in areas where Malaria is common. Chris' older brother has the disease as well. Half of his body has been paralysed due to a brain bleed.
The red blood cells in sickle cell patients are not round, but shaped like a half moon. This causes severe chronic anaemia. During attacks, the cells clot and cause blockages in blood vessels. This can make you very sick and cause severe bone pain. With many medicines and blood transfusions, the disease can be controlled.
Chris prefers to mention his disease in passing, like it doesn't really matter. He explains he is easily tired, and suffers pains if he does not drink enough, or if his body gets too cold. Simply jumping into a pool is not an option for him. 'I am always dressed warmly.' The family does not go on holiday further than half an hour's drive from the AMC in Amsterdam. His mother, Barrie, can see how he is doing by looking at the colour of his eyes. 'If they turn yellow, there's a big problem.'
Make the disease go away
Chris has little to say about the bone marrow transplant he underwent a few years ago. 'The wanted to make the disease go away, but that didn't work.' It almost killed him. Chris lost part of his sight and developed memory problems afterwards. Chris will depend on blood for the rest of his life. 'Hotel AMC', as he jokingly refers to his monthly visit. He likes the people in paediatrics a lot, so he doesn't mind going there for a day each month.
"I am already worrying about the day I turn 18 and have to go to a different ward."
Chris used to think the fact he got blood from other people was 'dirty'. But not any longer. 'I am glad that there are people I can get blood from. Otherwise I would be even sicker now.'
He is going to start training at the Cooking School in Amsterdam after the Summer. This is a major step, because there were only chronically ill children at his special primary school. Chris hopes they won't think he is making a big deal of things at his new school. His mother Barrie is also worried it will be too tiring. Shrugging: 'I'm going to try.'
Photo: Harry Meijer