Richard Walker has been trying to conquer ageing since he was a 26-year-old free-loving hippie. It was the 1960s, an era marked by youth: Vietnam War protests, psychedelic drugs, sexual revolutions. The young Walker relished the culture of exultation, of joie de vivre, and yet was also acutely aware of its passing.
He was haunted by the knowledge that ageing would eventually steal away his vitality – that with each passing day his body was slightly less robust, slightly more decayed. One evening he went for a drive in his convertible and vowed that by his 40th birthday, he would find a cure for ageing.
Walker became a scientist to understand why he was mortal. “Certainly it wasn’t due to original sin and punishment by God, as I was taught by nuns in catechism,” he says. “No, it was the result of a biological process, and therefore is controlled by a mechanism that we can understand.”
Medical science has already stretched the average human lifespan. Because of public health programmes and treatments for infectious diseases, the number of people over age 60 has doubled since 1980. By 2050, the over-60 set is expected to number 2 billion, or 22 per cent of the world’s population. But this leads to a new problem: more people are living long enough to get chronic and degenerative conditions. Age is one of the strongest risk factors for heart disease, stroke, macular degeneration, dementia and cancer. For adults in high-income nations, that means age is the biggest risk factor for death.
A drug that slows ageing, even modestly, would be a blockbuster. Scientists have published several hundred theories of ageing (and counting), and have tied it to a wide variety of biological processes. But no one yet understands how to integrate all of this disparate information. Some researchers have slowed ageing and extended life in mice, flies and worms by tweaking certain genetic pathways. But it’s unclear whether these manipulations would work in humans. And only a few age-related genes have been discovered in people, none of which is a prime suspect.
Walker, now 74, believes that the key to ending ageing may lie in a rare disease that doesn’t even have a real name, “syndrome X”. He has identified four girls with this condition, marked by what seems to be a permanent state of infancy, a dramatic developmental arrest. He suspects that the disease is caused by a glitch somewhere in the girls’ DNA. His quest for immortality depends on finding it.
It’s the end of another busy week and MaryMargret Williams is shuttling her brood home from school. She drives an enormous SUV, but her six children and their coats and bags and snacks manage to fill every inch. The three big kids are bouncing in the very back. Sophia, ten, with a mouth of new braces, is complaining about a boy-crazy friend. She sits next to Anthony, seven, and Aleena, five, who are glued to something on their mother’s iPhone. The three little kids squirm in three car seats across the middle row. Myah, two, is mining a cherry slushy, and Luke, one, is pawing a bag of fresh crickets bought for the family gecko.
Finally there’s Gabrielle, who’s the smallest child, at just 12 pounds, and the second oldest, at nine years old. She has long, skinny legs and a long, skinny ponytail, both of which spill out over the edges of her car seat. While her siblings giggle and squeal, Gabby’s dusty-blue eyes roll up towards the ceiling. By the calendar, she’s almost an adolescent. But she has the buttery skin, tightly clenched fingers and hazy awareness of a newborn.
Back in 2004, when MaryMargret and her husband, John, went to the hospital to deliver Gabby, they had no idea anything was wrong. They knew from an ultrasound that she would have club feet, but so had their other daughter, Sophia, who was otherwise healthy. And because MaryMargret was a week early, they knew Gabby would be small, but not abnormally so. “So it was such a shock to us when she was born,” MaryMargret says.
Gabby came out purple and limp. Doctors stabilised her in the neonatal intensive care unit and then began a battery of tests. Within days the Williamses knew their new baby had lost the genetic lottery. Her brain’s frontal lobe was smooth, lacking the folds and grooves that allow neurons to pack in tightly. Her optic nerve, which runs between the eyes and the brain, was atrophied, which would probably leave her blind. She had two heart defects. Her tiny fists couldn’t be pried open.
She had a cleft palate and an abnormal swallowing reflex, which meant she had to be fed through a tube in her nose. “They started trying to prepare us that she probably wouldn’t come home with us,” John says. Their family priest came by to baptise her.
Day after day MaryMargret and John shuttled between Gabby in the hospital and 13-month-old Sophia at home. Gabby gradually learned to feed from a bottle and gained a bit of weight, though she was still less than five pounds. The doctors tested for a few known genetic syndromes, but they all came back negative. Nobody had a clue what was in store for her. Her strong Catholic family put their faith in God. “MaryMargret just kept saying, ‘She’s coming home, she’s coming home’,” recalls her sister, Jennie Hansen. And after 40 days, she did.
Gabby cried a lot, loved to be held, and ate every three hours, just like any other newborn. But of course she wasn’t. Her arms would stiffen and fly up to her ears, in a pose that the family nicknamed her “Harley-Davidson”. At four months old she started having seizures. Most puzzling and problematic, she still wasn’t growing. John and MaryMargret took her to specialist after specialist: a cardiologist, a gastroenterologist, a geneticist, a neurologist, an ophthalmologist and an orthopaedist.
“You almost get your hopes up a little – ‘This is exciting! We’re going to the gastro doctor, and maybe he’ll have some answers’,” MaryMargret says. But the experts always said the same thing: nothing could be done.
The first few years with Gabby were stressful. When she was one and Sophia two, the Williamses drove from their home in Billings, Montana, to MaryMargret’s brother’s home outside of St Paul, Minnesota. For nearly all of those 850 miles, Gabby cried and screamed. This continued for months until doctors realised she had a run-of-the-mill bladder infection. Around the same period, she acquired a severe respiratory infection that left her struggling to breathe. John and MaryMargret tried to prepare Sophia for the worst, and even planned which readings and songs to use at Gabby’s funeral. But the tiny toddler toughed it out.
While Gabby’s hair and nails grew, her body wasn’t getting bigger. She was developing in subtle ways, but at her own pace. MaryMargret vividly remembers a day at work when she was pushing Gabby’s stroller down a hallway with skylights in the ceiling. She looked down at Gabby and was shocked to see her eyes reacting to the sunlight. “I thought, ‘Well, you’re seeing that light!’” MaryMargret says. Gabby wasn’t blind, after all.
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