SLIPPING AWAY: Jo has Alzheimer's. He's 38.

Robin Giles felt like she was missing a joke. It was Christmas morning in 2012, and she and her husband, Joël, were going through familiar traditions in their apartment in London, Ont. Later they’d go out to visit friends and family, but for now, it was just the two of them and their cats.

They opened their stockings first, and Robin was becoming more puzzled with each object she pulled out: They were utterly random. Jo had always been a thoughtful gift-giver. One year for Christmas, he gave Robin a beautiful set of bound Paddington Bear books, a nod to her childhood favourite. He’d often come home from work with an album for her, or a treasure he found at a used bookstore. Today, though, her stocking was filled with CDs she already owned, and a used container of hand cream, as though Jo had bought a store tester. She kept thinking there was a punchline or a theme she wasn’t seeing.

“I remember being really upset that Christmas—not because of the material stuff, but because it just felt weird,” Robin says. “It felt really weird.”

Something was wrong. This wasn’t Jo.

That Christmas, Joël Aubin was 36 years old and already battling hard to work around an erosion process that was hard-wired into every cell of his body. He had dominantly inherited Alzheimer’s disease, the result of a genetic mutation that snakes through family trees. The disease itself is rare, and Jo is a nearly unheard-of aberration because of his age. He wouldn’t know he had the disease for another 18 months—but he’d seen it all before: His mother was 47 when she died of the same illness. Jo’s teenage world had been ripped from its frame then, but he had grown up with no idea that he had a 50/50 chance of inheriting the same fate. Alzheimer’s disease would fray his marriage before fundamentally changing it, shrink Jo’s world to the size of his neighbourhood and forge his friends and family into a tight support system. And it would lead Jo to resolve to avoid a long goodbye like his mother’s, and to choose when his story would end.

The dominantly inherited form of the disease is said to account for fewer than one per cent of Alzheimer’s cases—Jo’s specialist pegs it at much rarer than even that—and it’s caused by a mutation in one of three genes. While the more common type of Alzheimer’s carries a genetic risk component that means certain people are more likely to develop the disease, this genetic mutation is different: For an unlucky few like Jo, it’s a terrible guarantee. These people overproduce a protein called beta-amyloid, which accumulates in their brains as “plaques,” while another protein called tau twists itself into “tangles” inside the nerve cells. Together, they strangle neurons and eventually consume memory and ability as the brain withers.

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SLIPPING AWAY:Jo has Alzheimer's.  He's 38