For their youngest son’s fifth birthday this summer, Edith Lemay and her husband took their children on a hot-air balloon ride above central Turkey that began before dawn.
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. “That’s what we all felt 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 yearlong trip across Asia and Africa. Three of the French Canadian couple’s four children have a rare eye condition that has already impaired their vision and will slowly destroy it entirely unless an effective treatment materializes. The trip is a chance for them to see memorable sites while they still can.
In another sense, Ms. Lemay said, her family’s journey across Asia and Africa is a catalyst for her three children with retinitis pigmentosa — Laurent, 5, Colin, 7, and Mia, 11 — to develop what she called “solution-oriented” behavior in the face of setbacks large and small, a habit that could prove useful as their eyesight continues to diminish. (Her oldest boy, Leo, 9, does not have the condition.)
Ms. Lemay said she also hoped the trip would force her children to appreciate how lucky they are in a world where many of their peers do not have electricity in their homes, books in their schools or other comforts that people in wealthy countries take for granted.
“I want them to look at their life and see what’s good, what’s beautiful in it,” she said by phone last month from Indonesia, as Laurent splashed in a nearby swimming pool. “Not the little problem with their eyes.”
The prognosis
Retinitis pigmentosa encompasses a group of hereditary disorders that affect an estimated one in 3,000 to 4,000 people worldwide, including as many as 110,000 in the United States, according to the National Organization for Rare Disorders, a nonprofit in Massachusetts. It causes slow degradation of the retina, and the symptoms can develop over decades.
People with retinitis pigmentosa typically begin to lose their vision during childhood. In the next phase of the disease’s progression, they start to lose their peripheral vision, making it hard for some children to play sports or to avoid bumping into their classmates in the hallways, said Alfred S. Lewin, a professor emeritus of molecular genetics and microbiology at the University of Florida in Gainesville.
In advanced stages of the condition, their vision becomes so impaired that they are considered legally blind, though most do not completely lose their ability to detect light, Dr. Lewin said. But 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.
For now, existing therapies can help slow the progression of the condition, said Lin Bin, a professor of optometry at Hong Kong Polytechnic University.
“These treatments can buy time for the patients for new research breakthroughs and new and more effective treatments,” he said.
Facing reality
Ms. Lemay said that while she and her husband were cautiously hoping for a breakthrough treatment, they did not want to set themselves or their children up for disappointment.
“If a new treatment comes, good, we’ll be super happy,” she said in mid-September from the Gili Islands of Indonesia, where her children had just snorkeled with turtles. “But we’re not going to be sitting there waiting on a cure. We want our children to accept their situation and learn how to make the best of it.”
At this early stage, the children do not talk much about their eyesight, and they occasionally even crack jokes about their condition, Ms. Lemay said. The only reason she has been discussing it so much lately is because reporters keep calling to ask about the round-the-world trip.
“It’s not something 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, it can be hard to discuss retinitis pigmentosa with her children, especially Laurent, who doesn’t yet understand its full implications. “How am I going to cross the street?” he asked her this summer as the family drove through the Mongolian Steppes in a Russian-built van. “Will my wife be blind?”
Another time in Mongolia, Ms. Lemay was gazing at the Gobi Desert’s night sky when she remembered that her three children who have the condition cannot see stars because of their night-vision loss. She did not bother to wake them up.
Seeing the sites
Ms. Lemay said that the trip so far had been loaded with adventure and serendipity, and that her children never seemed to become bored.
Their journey began with a three-month, coast-to-coast, overland trip across southern Africa. An early highlight for the children, 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 hawk 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 children loved that, too, even if the toilet facilities along the way ranged from “abominable to bearable,” as Ms. Lemay put it on her Facebook page. Her daughter, Mia, enjoyed riding horses so much that she cried tears of joy. And even though Mia and two of her brothers can no longer see stars, they enjoyed looking at pictures of the Gobi’s night sky on their mother’s laptop.
Soyolsaikhan Baljinnyum, the family’s tour guide in Mongolia, said by phone that the family was one of the kindest he had ever met.
“It really hurts me when I think about them losing their vision,” he said of the three children with the eye condition. “But there’s always hope; there could be a miracle.”
Ms. Lemay, who works in health care logistics, said her family planned to spend the next two months island-hopping across Indonesia by boat and bus. From there, they intend to visit Malaysian Borneo, Thailand, Cambodia and Vietnam, with a potential stop in Hawaii on their way back to Canada. But it’s all subject to change: Their itinerary is fixed only 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 whatever their parents had planned to show them, such as stray cats and dogs, or a tiny beetle they spotted at the base of a colossal red sand dune in Namibia.
“Hey, we came all the way around the world to see that, and you’re looking at a little bug?” Ms. Lemay said she asked them at the UNESCO World Heritage site.
“But if we listen to them,” she added, “they show us that there is beauty everywhere.”
