For their youngest son’s fifth birthday this summer, Edith Lemay and her husband took their children on a pre-dawn hot air balloon ride over central Turkey.
As the sun rose over the Cappadocia region, it revealed other balloons floating in the sky and some chimney-like rock formations on the ground below – a transcendent experience that her 9-year-old likened to a dream. “We all felt that because it was way too magical,” Ms. Lemay said.
Six months ago, Ms Lemay, 44, and her husband, Sebastien Pelletier, 45, left their home in the Montreal area for a year-long tour of Asia and Africa. Three of the French-Canadian couple’s four children have a rare eye condition that has already affected their vision and will slowly destroy it completely unless effective treatment is found. The trip is an opportunity for them to see unforgettable places while they still can.
In another sense, Ms Lemay said her family’s journey through Asia and Africa is a catalyst for her three children with retinitis pigmentosa – Laurent, 5, Colin, 7, and Mia, 11 – to develop what they call “solution-oriented.” called. Behavior in the face of big and small setbacks, a habit that might come in handy if their eyesight continues to deteriorate. (Her oldest boy, Leo, 9, doesn’t have the condition.)
Ms Lemay said she also hoped the trip would make her children appreciate how lucky they are in a world where many of their peers don’t have electricity in their homes, books in their schools or other conveniences that people in wealthy countries take for granted.
“I want them to look at their life and see what’s good and beautiful in it,” she said over the phone from Indonesia last month as Laurent splashed around at a nearby swimming pool. “Not the little problem with her eyes.”
Retinitis pigmentosa is a group of inherited disorders estimated to affect one in 3,000 to 4,000 people worldwide, including up to 110,000 in the United States, according to the National Organization for Rare Disorders, a nonprofit organization in Massachusetts. It causes the retina to deteriorate slowly, and symptoms can develop over decades.
People with retinitis pigmentosa typically start losing their vision in childhood. In the next phase of the disease’s progression, they begin to lose their peripheral vision, making it difficult for some children to play sports or avoid bumping into their classmates in the hallways, said Alfred S. Lewin, professor emeritus of molecular genetics and microbiology at the University of Florida at Gainesville.
In advanced stages of the disease, their vision becomes so impaired that they are considered legally blind, although most do not completely lose their ability to see light, said Dr. Levin. However, several promising new experimental therapies are in human clinical trials and could be approved in the next few years, potentially helping many children and young adults with the condition avoid blindness, he added.
Currently, existing therapies can help slow the progression of the disease, said Lin Bin, a professor of optometry at Hong Kong Polytechnic University.
“These treatments can buy patients time for new research breakthroughs and new and more effective treatments,” he said.
Ms Lemay said that while she and her husband were cautiously hoping for a breakthrough treatment, they didn’t want to set themselves or their children up for disappointment.
“If a new treatment comes along, well, we’re super happy,” she said in mid-September from Indonesia’s Gili Islands, where her children had just snorkeled with turtles. “But we will not sit and wait for a cure. We want our children to accept their situation and learn to make the best of it.”
At this early stage, children don’t talk much about their vision and even occasionally joke about their condition, Ms Lemay said. The only reason she’s been discussing it so much lately is because reporters keep calling and asking about the world trip.
“There is nothing sad in our family,” she said. “It’s just something that’s going to happen and we’re going to face it.”
At the same time, she said, talking about retinitis pigmentosa with her children can be difficult, especially with Laurent, who doesn’t yet understand its full implications. “How am I supposed to cross the street? he asked her this summer as the family drove across the Mongolian steppes in a Russian-built van. “Will my wife be blind?”
Another time in Mongolia, Ms Lemay was gazing at the night sky in the Gobi desert as she recalled her three children, who have the disease, being unable to see stars due to their night vision loss. She didn’t bother to wake her up.
Ms Lemay said the journey so far has been full of adventure and serendipity, and that her children never seemed to get bored.
Her journey began with a three-month coast-to-coast overland journey through southern Africa. An early highlight for the kids, she said, was a 24-hour train ride across Tanzania, where they slept in bunk beds and watched in awe as vendors approached the windows to sell bananas.
After a month in Turkey, the family traveled to Mongolia and spent more than a month on a road trip through the countryside, staying in yurts and eating boiled mutton.
The kids thought that was great, too, even though the toilet facilities along the way ranged from “disgusting to tolerable”, as Ms. Lemay put it on her Facebook page. Her daughter Mia enjoyed riding so much that she cried tears of joy. And although Mia and two of her brothers can no longer see the stars, they have enjoyed viewing images of the Gobi night sky on their mother’s laptop.
Soyolsaikhan Baljinnyum, the family’s tour guide in Mongolia, said over the phone that the family is one of the friendliest he’s ever met.
“It really hurts me to think about them losing their sight,” he said of the three children with the eye disease. “But there is always hope; there could be a miracle.”
Ms Lemay, who works in healthcare logistics, said her family plans to travel around Indonesia by boat and bus from island to island over the next two months. From there they intend to visit Malaysian Borneo, Thailand, Cambodia and Vietnam with a possible stopover in Hawaii on the way back to Canada. But it’s all subject to change: your itinerary is only set about a month in advance.
Among the surprises so far, Ms Lemay said, is the way her children tend to fixate on things that seem peripheral to what their parents wanted them to see, like stray cats and dogs or a tiny bug, discovered at the base of a colossal red sand dune in Namibia.
“Hey, we’ve traveled all over the world to see this and you see a little bug?” Ms Lemay said she asked her at the UNESCO World Heritage site.
“But when we listen to them,” she added, “they show us that beauty is everywhere.”