Bournemouth (UK), Haemophilia A
Cassius Lister is just like any 11-year-old, football-crazy kid. Haemophilia came in the way of his last game, but he still keeps on playing, and doesn’t let his condition define him.
In the middle of the English coast-city Bournemouth, in a typical middle class area lives the Lister family. Their brick house is surrounded by a small lawn centred around a football goal. On the top floor of the house, a boy’s room is filled
with football trophies and the walls are covered with posters; amongst others one of Cassius Clay, who has the same name as the owner of the room.
“When we met Cassius he had injured himself and hade to rest for a few weeks. But he still continues to dream about football, to carry on playing and try to become even better,” says Goran Kapetanovic.
“For him this is not a disease, he doesn’t let the diagnosis win.”
Both Cassius Lister and his brother Johnny are on prophylaxis, the only difference being that Johnny started his treatment at birth while Cassius didn’t get access to it until later. This meant that Cassius had to endure some physical pain due to the bleedings, as well as some discrimination.
“His mother told us about one time when he started bleeding on a trip. The cabin crew refused to let him board the plane, says Goran Kapetanovic.
But still Cassius Lister doesn’t let the illness stop him.
”He’s just like any other boy who wants to do good at football practice and doesn’t reflect on his illness,” says Goran Kapetanovic who describes the first meeting with Cassius as a little bit tentative, but strong.
“Even though he was a little shy he could still tell a detailed story about life as a haemophiliac. He believes in himself and doesn’t see haemophilia as a problem, and that made a strong impression on me.”
To win over ones disease
Goran Kapetanovic first met the Lister Family through Liz Carroll who is the chief executive of the UK Haemophilia Society. He wanted to tell a story from a Western European point of view, to show the differences between the European countries.
“The Lister family have never had to queue in hospital lines since the medication is brought to their door. That gives the family a whole other possibility to plan for the future,” says Goran Kapetanovic. Still he’s convinced that the greatest factor allowing the two boys to live a normal life is the boys’ mother, Hannah Lister.
“She is raising her kids in an amazing way. She refuses to let them be defined by haemophilia,” says Goran Kapetanovic.
“They strive to be a regular family and do everything that other people do. She is already teaching the boys to self-medicate in order to become independent individuals that can make it out in the world. She teaches them that a diagnosis doesn’t have to be an obstacle.”
For him this is not a disease, he doesn’t let the diagnosis win.