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.
Denne historien er fra January 2017-utgaven av Reader's Digest India.
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Denne historien er fra January 2017-utgaven av Reader's Digest India.
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From the King's Table to Street Food: A Food History of Delhi
Pushpesh Pant, one of India’s pre-eminent food writers, is back with a comprehensive food history of the capital.
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Prevent The Pain Of Shingles
You don't have to suffer, as long as you take two important steps
The Best And Worst Diets For Your Heart
Dozens of diets are touted as ‘best’, but it’s easy to lose track of the fact that healthy eating needs to be about overall wellness, not just weight loss.
ME & MY SHELF
Journalist Sopan Joshi has worked in a science and environment framework for nearly three decades. His book Mangifera indica: A Biography of the Mango (Aleph Book Company) synthesizes the sensory appeal of India's favourite fruit with its elaborate cultural roots and natural history. He writes in English and Hindi.
SWITCHED
In 1962, nurses at a small Canadian hospital sent home two women with the wrong babies. Then, 50 years later, their children discovered the shocking mistake.
ECHOES OF THE PAST
A VISIT TO THE ANCIENT BARABAR CAVES IN BIHAR REVEALS A SURPRISING CONNECTION TO A LITERARY CLASSIC
Fathers of the Bride
A young woman finds a unique way to honour the many men who helped her survive her childhood
Fiction's Foresight
British-Bangladeshi author Manzu Islam's works reveal startling parallels to recent political upheavals in Bangladesh, begging the question: Besides helping us make sense of our world, can stories also offer a glimpse into the future?
It Happens ONLY IN INDIA
The Divine Defence Picture this: A tractor in Rajasthan‘s Banswara district,a group of loan agents closing in to seize it and the defaulting farmer and his family standing by.
