Christophe began thinking about euthanasia three years ago.
A year ago, he started applying for it.
The illness started without warning when he suddenly fell into a coma at the age of 17.
Diagnosed with a rare genetic disease, cause unknown, Christophe was told by his specialist that his life expectancy was “around 5 to 20 years”.
As his condition worsened, Christophe lost his job when he was regularly absent from work 15 days a month.
Constantly fatigued, he often falls, and suffers from breathlessness and swollen glands.
Unable to work and separated from his partner with whom he has four children aged 4 to 10, Christophe lives alone.
The only two known treatments for his condition, which is so rare it has an annual rate of 1 to 2 cases per million, are: a bone marrow transplant and a drug called Eculizumab (or Soliris).
But for a bone marrow transplant, he needs a compatible donor.
"They searched with my sister, my brother, my parents ... but nobody was," says Christophe.
And Eculizumab costs US$500,000 annually for which his insurance company tells him that he does not meet the criteria, and Belgium’s healthcare system does not meet such a cost.
Out of options, he has applied for euthanasia.
He considers that the public authorities "let people die in Belgium".
"Every time they ask for additional criteria, they have a list and that's it," he says.
"It [Eculizumab] would not save me but it could make me live a decade more with my children. What really hurts me is that I know they will lose me."
Christophe’s devastating story is not one you’ll hear as the life-and-death argument over euthanasia plays out in our Western Australian and Queensland state parliaments.
The euthanasia lobby would tell Christophe’s story very differently: here is an irreversibly ill man, suffering, wanting and waiting to die.
But that’s not the story Christophe tells: he wants to live, he wants treatment, he wants to stay with his children until, having done all, they must “lose” him.
Christophe doesn’t want to die – he just doesn’t want to live “like this”.
The system has failed him, offering only one other options besides the two he’s already exhausted: euthanasia.
As always, the vulnerable pay the ultimate price for death on demand.
Unable to afford what they need – be it medication, a treatment, palliative care, or other – the sick, the poor and the elderly are increasingly finding they have nowhere else to turn.