Swathed in filmy fabric, with her hair artfully tousled and her dark eyes glinting impishly, 11-year-old Megan Alarie balances on a stool while famous photographer Anne Geddes (remember the flowerpot babies?) snaps shot after shot. “Where’s your lovely smile?” Geddes asks. “There it is! Isn’t it gorgeous?” Days later, in the same studio, with one arm wrapped around his stepfather’s neck, Benjamin Gagnon,15, flashes Geddes a gap-toothed grin before sticking out his tongue. In the resulting photos, Megan’s and Benjamin’s personalities capture the viewer’s attention—the fact that Megan is missing both lower legs and eight fingers, and that Benjamin has lost his lower legs, right hand and two fingers on his left hand only register afterward.
By modelling for Geddes’s latest project, Protecting Our Tomorrows (which is co-sponsored by the Confederation of Meningitis Organizations and Novartis, a vaccine manufacturer), Megan and Benjamin are helping to draw attention to an extremely rare but fast-moving and potentially disfiguring or deadly disease caused by meningococcal bacteria. The campaign is aimed at disease prevention and parental empowerment by raising awareness of the symptoms and the availability of vaccines against it. It features gorgeous portraits of kids from Canada, Brazil, the US, Australia, the UK and other countries throughout Europe who’ve survived meningococcal disease. The Canadian photos will be officially released as part of an eBook on April 24, World Meningitis Day.
“This series slots in perfectly with what I represent,” says Geddes, who is a global advocate for an initiative that funds life-saving vaccines for kids in the developing world and a long-time supporter of several children’s charities.
Megan’s mom, Vicky McCormack, of Sainte-Adèle, Que., says her family is taking part with hopes that parents will be able to recognize the symptoms of meningococcal disease, and act quickly and decisively. “You’ve only got hours to find a doctor,” she says, since treatment (mainly powerful antibiotics) must be started immediately.
For Megan, then two, it started with a fever, fussiness and eventually a chicken-pox-like rash. Benjamin was four-and-a-half months old when he developed what seemed like a tummy bug. Less than half a day after their respective symptoms began, Megan was in intensive care, her organs failing; Benjamin was so gravely ill that doctors were asking his terrified mother, Marie-Ève Gagnon, whether she wanted to let him go. Earlier that evening, after being awoken by her baby son’s ragged, laboured breathing, Marie-Ève had turned on the light to find her first-born’s body covered in bluish blotches and blood spots, like a red pinprick rash. “His fingers and nails were turning black, like little raisins,” recalls the Terrebonne, Que., mom of five.
Also known as Neisseria meningitidis, meningococcal is a family of bacteria that 10 to 20 percent of us carry in our noses and throats, and which can be transmitted through sneezing and coughing. Usually these germs don’t cause any problems, but when they do (often following a viral bug), they breach the body’s defenses. “Then, you either get meningitis (a swelling of the tissues surrounding the brain and spinal cord) or the infection takes hold in your blood, and you get catastrophically sick,” explains Marina Salvadori, a London, Ont., paediatric infectious disease specialist and member of National Advisory Committee on Immunization. The blood infection, called meningococcemia, is the more serious of the two, and can lead to organ failure and tissue death, requiring life-saving amputations.
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“Up to 50 percent of people with meningococcemia die, even with the best care,” says Salvadori, versus the five-percent death rate of those with meningococcal meningitis. Overall, roughly 20 percent of kids who survive meningococcal disease will be left with permanent reminders like hearing loss or brain damage, which aren’t preventable even with prompt treatment.
Scary? Absolutely. But there’s good news. Firstly, the odds of getting meningococcal disease are now so low that a doctor might see only one case in her career. Kids younger than two run the highest risk, and only about one in 10,000 will get it (though, for unknown reasons, infection rates are higher in Quebec). To put that into perspective, before vaccinations against it started being added to Canada’s routine childhood immunization schedule in 2003, pneumococcal meningitis struck one in 500 Canadian kids younger than five. Secondly, all provinces and territories cover shots against at least one type of meningococcal bacteria (C), and many pick up the tab for vaccination against four strains (A, C, Y and W-135), which reduces the chance of catching these infections up to 97 percent if vaccinated in infancy. While effectiveness wanes over time, most provinces cover at least one recommended booster.
But because some kids will still develop meningococcal disease—Megan did, despite being vaccinated—it’s important that parents know what to watch for, so they can promptly seek medical attention. In the early stages, meningococcal disease is impossible to distinguish from the flu—symptoms include fever, irritability and drowsiness—but these are quickly followed by other clues, which can include severe headache, vomiting, seizures and a red pinprick rash (which gradually turns purplish) that doesn’t fade when you press on it. “It’s not subtle or easily missed,” Salvadori reassures. Still, sometimes parents sense the seriousness of the illness before medical personnel. “You know your child better than anyone else, so if you’ve got a gut feeling, make sure you get heard,” Geddes stresses.
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Health Canada has recently approved a new vaccine (called Bexsero) against the B strain, which is currently responsible for more than 70 percent of meningococcal cases in kids younger than five—and is the strain that affected Benjamin. Because the disease is so rare, it won’t be possible to tell how effective this vaccine is until it has been widely administered. Already available in Australia and throughout Europe, the jab has side effects similar to other childhood immunizations, the most common being redness and swelling at the injection site, as well as fever. There’s no word yet on whether the new shot will be covered by provincial and territorial health plans, though parents can opt to pay out of pocket or through extended medical insurance starting at about $100 a pop.
“Kids can come out of this very successfully—we’re living proof,” says Megan’s mom, Vicky McCormack. “Megan started snowboarding last year, and she wants to be a movie star, or a singer.” While Benjamin was more severely affected—suffering significant brain damage —he’s a joyful, engaging kid who’s obviously much loved, and Marie-Ève has used their nightmarish experience to help others by founding French Canada’s only meningitis patient advisory group. For her, the knowledge that Benjamin’s participation in Protecting Our Tomorrows may help protect other children, “has turned what was our disaster 15 years ago into happiness,” she says.
Check out the behind-the-scenes footage from Anne’s Protecting Our Tomorrow shoot in London, UK.
This story originally appeared in our May 2014 issue under the title, “Picture perfect,” pp. 30-32.