At six months, Alexander rarely smiled or moved on his own. With little known about his syndrome, his parents charted their own course.
FOR THE FIRST SIX MONTHS of Alexander’s life, I wanted to believe he might get well on his own. I would often lie down on the floor and make faces at him, trying to tease out a smile. Sometimes, after lots of effort, it worked. But mostly, my son was motionless and silent, his eyes focused on nothing in particular.
It was fall 2009 and my wife, Ashley, and I had only just moved into a new home in downtown Calgary, Canada. We had a vivacious four-year-old daughter named Sloane, a grouchy Siamese cat and an infant son who was a mystery. Alexander had been born hypotonic—floppy, basically— with an abdominal hernia, a heart murmur, strange folds on his ears and a V-shaped birthmark in the centre of his forehead. The geneticist assigned to us in intensive care, Micheil Innes, knew these were markers of a genetic disorder, but he couldn’t place it.
Even after Alexander was healthy enough to come home, he remained undersized and underweight, hardly able to hold up his head. Amid the blurry rush of feeding and diapers and getting Sloane off to school, I could pretend he was just a little quiet and weak for his age. But the truth is, we often wondered if there was any awareness inside him at all.
The first tentative answer arrived on a dark afternoon in December. We were called to a small room at the Alberta Children’s Hospital where Innes explained that a piece of our son’s genetic coding simply wasn’t there. He showed us the lab results: rows of striped squiggles like some ancient alphabet and a red dot indicating the location of the missing material—near the end of the ‘q’ branch of the ninth pair of chromosomes. The precise spot, in technical terms, was 9q34.3.
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BOOKS
Books review
STUDIO - Off Lamington Road by Gieve Patel
Oil on Canvas, 54 x 88 in
NEWS FROM THE WORLD OF MEDICINE
FOODS THAT FIGHT DEMENTIA
TO HELL AND BACK
The Darvaza crater in Turkmenistan is known as the Gates of Hell. I stood on its edge - and lived to tell the tale
THE SNAKE CHARMERS
Invasive Burmese pythons are squeezing the life out of Florida's vast Everglades. An unlikely sisterhood is taking them on
Sisterhood to Last a Lifetime
These college pals teach a master class in how to maintain a friendship for 50-plus years
...TO DIE ON A HOCKEY RINK
ONE MINUTE I WAS PLAYING IN MY BEER LEAGUE, THE NEXT I WAS IN THE HOSPITAL
Just Sit Tight
Broken, battered and trapped in a ravine for days, I desperate driver wonders, \"Will anyone find me?\"
Allow Me to Mansplain...
If there's one thing we know, it's this: We're a nation of know-it-alls
THE BITTER TRUTH ABOUT SUGAR (AND SUGAR SUBSTITUTES!)
It's no secret that we have a serious addiction. Here's how to cut back on the sweet stuff, once and for all.