Most researchers agree that finding out the genes behind Syndrome X is a worthwhile scientific endeavour, as these genes will no doubt be relevant to our understanding of development. They’re far less convinced, though, that the girls’ condition has anything to do with ageing. “It’s a tenuous interpretation to think that this is going to be relevant to ageing,” says David Gems, a geneticist at University College London. It’s not likely that these girls will even make it to adulthood, he says, let alone old age.

It’s also not at all clear that these girls have the same condition. Even if they do, and even if Walker and his collaborators discover the genetic cause, there would still be a steep hill to climb. The researchers would need to silence the same gene or genes in laboratory mice, which typically have a lifespan of two or three years. “If that animal lives to be 10, then we’ll know we’re on the right track,” Walker says. Then they’d have to find a way to achieve the same genetic silencing in people, whether with a drug or some kind of gene therapy. And then they’d have to begin long and expensive clinical trials to make sure that the treatment was safe and effective. Science is often too slow, and life too fast.

End of life

On 24 October 2013, Brooke passed away. She was 20 years old. MaryMargret heard about it when a friend called after reading it in a magazine. The news hit her hard. “Even though we’ve never met the family, they’ve just been such a part of our world,” she says.

MaryMargret doesn’t see Brooke as a template for Gabby – it’s not as if she now believes that she only has 11 years left with her daughter. But she can empathise with the pain the Greenbergs must be feeling. “It just makes me feel so sad for them, knowing that there’s a lot that goes into a child like that,” she says. “You’re prepared for them to die, but when it finally happens, you can just imagine the hurt.”

Today Gabby is doing well. MaryMargret and John are no longer planning her funeral. Instead, they’re beginning to think about what would happen if Gabby outlives them. (Sophia has offered to take care of her sister.) John turned 50 this year, and MaryMargret will be 41. If there were a pill to end ageing, they say they’d have no interest in it. Quite the contrary: they look forward to getting older, because it means experiencing the new joys, new pains and new ways to grow that come along with that stage of life.

Richard Walker, of course, has a fundamentally different view of growing old. When asked why he’s so tormented by it, he says it stems from childhood, when he watched his grandparents physically and psychologically deteriorate. “There was nothing charming to me about sedentary old people, rocking chairs, hot houses with Victorian trappings,” he says. At his grandparents’ funerals, he couldn’t help but notice that they didn’t look much different in death than they did at the end of life. And that was heartbreaking. “To say I love life is an understatement,” he says. “Life is the most beautiful and magic of all things.”

If his hypothesis is correct – who knows? – it might one day help prevent disease and modestly extend life for millions of people. Walker is all too aware, though, that it would come too late for him. As he writes in his book: “I feel a bit like Moses who, after wandering in the desert for most years of his life, was allowed to gaze upon the Promised Land but not granted entrance into it.”

This is an edited version of an article originally published by Mosaic, and is reproduced under a Creative Commons licence. For more Mosaic articles click here.

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