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.