Father of four denied treatment seeks euthanasia in despair
Christophe, a father of four young children aged 4, 6, 7 and 10 years old, has begun the process of seeking euthanasia in Belgium, after the Belgian health system refused funding support for the only available treatment for the rare blood disease - paroxysmal nocturnal hemoglobinuria – which he has suffered from since he was 17 years old.
The disease which is caused by a random mutation and is not inheritable. It causes red blood cells to be attacked resulting in fatigue, a risk of thrombosis and organ deterioration. The disease is degenerative with no known cure. However, treatment with a monoclonal antibody called Soliris has proved successful in achieving significantly reduced hemolysis (destruction of red blood cells) leading to to an improvement in symptoms and a reduction of thrombotic events, which can prove fatal.
Six months treatment costs 50,000 euros.
The father of four young children says:
It would not save me but it could make me live a decade more with my children.
What really makes me sick is that I know they're going to lose me.
Today, Christophe lives alone. He separated from the mother of his children two years ago, "to give her back her freedom," he says. "I was not too present, I slept all the time, it was always the hospitals ... It's tiring for a girl like her," he says.
Christophe feels so weak that he does not come out of his house anymore. "Every time I went out I grabbed a microbe," he says. "I'm at home, I do tidying up, I watch TV, I'm eating," he continues. His children visit him on weekends, always in the presence of his parents. "If I fall into a coma, it's not my 4-year-old daughter, my 10-year-old son, the youngest 7 and 6 years old, who can call an ambulance," he says.
Apart from these visits, Christophe no longer enjoys anything. "I live like a prison," he laments. He began thinking about euthanasia three years ago. Over the last year, he has embarked on the steps that would allow him to be euthanased.
Christophe’s is not the first case where the cost of treatment or proper care has been a factor in considering euthanasia or assisted suicide. Read more here about the risk of wrongful death from assisted suicide or euthanasia due to being denied funding for medical treatment or care.
This blog is based on an article in French originally published here by RTLInfo.