For their youngest son’s fifth birthday this summer, Edith Lemay and her husband took their children on a hot air balloon ride over central Turkey that started before dawn.
As the sun rose over the Cappadocia region, it revealed more balloons floating in the sky and chimney-like rock formations on the ground below – a transcendent experience that her 9-year-old compared 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, Sébastien Pelletier, 45, left their Montreal-area home for a year-long trip through Asia and Africa. Three of the French-Canadian couple’s four children have a rare eye disease that has already impaired their vision and will slowly destroy it entirely unless 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 trip through 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, big and small, a habit that could come in handy as their eyesight continues to decline. (Her eldest son, 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 don’t have electricity in their homes, books in their schools or other comforts that people in rich countries take for granted. .
“I want them to look at their lives and see what’s good, what’s beautiful,” she said by phone last month from Indonesia, as Laurent splashed around in a nearby pool. . “Not the small problem with their eyes.”
Retinitis pigmentosa encompasses a group of inherited disorders that affect about 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 from Massachusetts. It causes slow retinal degradation and symptoms can develop over decades.
People with retinitis pigmentosa usually begin to lose sight during childhood. In the next phase of disease progression, they begin to lose their peripheral vision, which makes it difficult for some children to play sports or avoid bumping into classmates in hallways, Alfred S. Lewin said. , 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 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 disease avoid blindness, he added.
For now, existing therapies can help slow disease progression, said Lin Bin, professor of optometry at Hong Kong Polytechnic University.
“These treatments can buy patients time for new research breakthroughs and new, more effective treatments,” he said.
Ms Lemay said that although she and her husband were cautiously hoping for a breakthrough treatment, they did not want to expose themselves or their children to disappointment.
“If a new treatment arrives, so much the better, we will be super happy,” she said in mid-September from the Gili Islands in Indonesia, where her children had just dived with turtles. “But we’re not going to sit here waiting for a cure. We want our children to accept their situation and learn to make the best of it.
At this early stage, children talk little about their eyesight and sometimes even make jokes about their condition, Ms. Lemay said. The only reason she’s been talking about it so much lately is because reporters keep calling to ask about the world tour.
“It’s not a sad thing in our family,” she said. “It’s just something that’s going to happen, and we’re going to deal with it.”
At the same time, she says, it can be difficult to discuss retinitis pigmentosa with her children, especially Laurent, who doesn’t yet understand all of its 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 pickup truck. “Will my wife be blind? »
Another time in Mongolia, Mrs. Lemay was gazing up at the night sky in the Gobi Desert when she remembered that her three children with the disease cannot see the stars because of their loss of night vision. She didn’t bother to wake them up.
Ms. Lemay said the trip so far has been full of adventure and serendipity, and her children never seem to get bored.
Their journey began with a three-month, coast-to-coast overland journey across southern Africa. One of the children’s first highlights, she said, was a 24-hour train ride through Tanzania, where they slept in bunk beds and watched in awe as vendors approach windows to sell bananas.
After a month in Turkey, the family traveled to Mongolia and spent more than a month road tripping through the countryside, staying in yurts and eating boiled mutton.
The kids loved it too, although the sanitary facilities along the way ranged from “awful to bearable”, as Ms Lemay put it on her Facebook page. His daughter, Mia, loved riding horses so much that she cried with joy. And even though Mia and two of her brothers can no longer see the stars, they enjoyed looking at photos 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 was one of the nicest he had ever met.
“It really hurts me when I think they’re 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 planned to spend the next two months traveling around Indonesia by boat and bus. From there they plan to visit Borneo in Malaysia, Thailand, Cambodia and Vietnam, with a potential stopover in Hawaii on the way back to Canada. But everything is subject to change: their itinerary is only fixed about a month in advance.
Among the surprises so far, Ms Lemay said, is how her children tend to fixate on things that seem peripheral to everything their parents planned to show them, like cats and dogs. strays, or a small beetle they spotted at the base. of a colossal red sand dune in Namibia.
“Hey, we traveled around the world to see this, and you’re looking at a little bug?” Ms. Lemay says 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.”
#world #vision #fades