For their youngest son’s fifth birthday this summer, Edith Lemay and her husband took them on a hot air balloon trip over central Turkey starting before dawn.
As the sun rises over Cappadocia, it reveals other balloons floating in the sky and some chimney-like rocks on the ground below – a transcendent experience the 9-year-old has likened to. A dream. “It was something we all felt because it was so magical,” Ms. Lemay said.
Six months ago, Ms Lemay, 44, and her husband, Sebastien Pelletier, 45, left home for the Montreal area for a year-long trip through Asia and Africa. Three of the French-Canadian couple’s four children have a rare eye condition that is already debilitating and will slowly go away unless effective treatment is available. The trip is a chance for them to see memorable places while they still can.
Elsewhere, Ms Lemay says, her family’s journey through Asia and Africa has been the catalyst for her three children to develop retinitis pigmentosa – Laurent, 5, Colin, 7 years old and Mia, 11, develop what she calls “solution-oriented”. behavior in the face of obstacles big and small, a habit that can prove helpful as their eyesight continues to decline. (Her oldest son, 9-year-old Leo, does not have the condition.)
Ms Lemay said she also hopes the trip will 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 school or other things. other amenities that people in rich countries take for granted. .
“I want them to look at my life and see what is good, what is beautiful in it,” she said by phone last month from Indonesia, as Laurent splashed in a nearby swimming pool. “Not a small problem with their eyes.”
Prognosis
According to the National Foundation for Rare Disorders, a Massachusetts nonprofit, retinitis pigmentosa includes a group of genetic disorders that affect an estimated 3,000 to 4,000 people worldwide, including including 110,000 people in the United States. It causes slow deterioration of the retina and symptoms can develop for decades.
People with retinitis pigmentosa often begin to lose vision in childhood. In the later stages of the disease’s progression, they begin to lose their peripheral vision, making it difficult for some children to play sports or avoid them, said Alfred S. Lewin, professor emeritus of molecular genetics. collide with classmates in the hallway. microbiology at the University of Florida at Gainesville.
During the advanced stages of the condition, their vision becomes so impaired that they are considered legally blind, although most do not completely lose the ability to detect light, Dr. But several promising new experimental therapies are in human clinical trials and could be approved in the next few years, potentially helping more children and young adults with the condition avoid blindness, he said. more.
Currently, available therapies can help slow the progression of the condition, said Lin Bin, a professor of optometry at Hong Kong Polytechnic University.
“These treatments can give patients time for new research breakthroughs and new and more effective treatments,” he said.
Facing reality
Ms Lemay says that while she and her husband are cautiously hoping for a breakthrough treatment, they don’t want to let themselves or their children down.
“If a new treatment comes in, that’s great, we’ll be happy,” she said in mid-September from Indonesia’s Gili Islands, where her children had just gone diving with turtles. “But we will not sit there waiting for a cure. We want our children to accept their situation and learn how to make the best of it. “
At this early stage, children don’t talk much about their eyesight, and they sometimes even joke about their condition, Ms. Lemay said. The only reason she’s been talking about this a lot lately is because reporters keep calling to ask about her trip around the world.
“It’s not something that is 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 difficult to discuss retinitis pigmentosa with her children, especially Laurent, who do not fully understand what it means. “How will I cross the street?” he asked her this summer when the whole family was driving through Mongolia Steppes in a Russian-made truck. “Is my wife blind?”
Another time in Mongolia, Lemay was looking up at the night sky of the Gobi desert when she remembered that her three children were unable to see the stars due to loss of night vision. She didn’t bother to wake them up.
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Ms Lemay says the trip so far has been full of adventure and chance, and her children never seem to get bored.
Their journey began with a three-month journey, from coast to coast, through southern Africa. An early highlight for the kids, she said, was the 24-hour train ride through Tanzania, where they slept in bunk beds and watched in awe as vendors approached the windows to drop bananas.
After a month in Turkey, the family traveled to Mongolia and spent over a month on a road trip through the countryside, staying in yurts and eating boiled lamb.
The kids love it, too, even if the toilet facilities along the way go from “awful to bearable”, as Ms Lemay puts it on her Facebook page. Her daughter, Mia, loved to ride horses so much that she cried with joy. And even though Mia and her two brothers can no longer see the stars, they still enjoy looking at Gobi’s pictures of the 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 people he had ever met.
“It really breaks my heart when I think about them losing their sight,” he said of three children with eye problems. “But there is always hope; there may be a miracle. “
Ms. Lemay, who works in healthcare logistics, said her family plans to spend the next two months cruising around Indonesia by boat and bus. From there, they plan to visit Malaysian Borneo, Thailand, Cambodia and Vietnam, with a potential stop in Hawaii en route back to Canada. But all that could change: Their itinerary was only set about a month in advance.
Ms Lemay said that among the surprises so far has been how her children tend to fix seemingly peripheral things to anything their parents intend to show them, such as cats and dogs. peanuts, or a small bug they found at the base of a tree. of a giant red sand dune in Namibia.
“Hey, we’ve gone all over 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.”
