For his or her 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.
Because the sun rose over the Cappadocia region, it revealed other balloons floating within the sky and a few chimney-like rock formations on the bottom below — a transcendent experience that her 9-year-old likened to a dream. “That’s what all of us felt since it was way too magical,” Ms. Lemay said.
Six months ago, Ms. Lemay, 44, and her husband, Sebastien Pelletier, 45, left their home within the Montreal area for a yearlong trip across Asia and Africa. Three of the French Canadian couple’s 4 children have a rare eye condition that has already impaired their vision and can slowly destroy it entirely unless an efficient treatment materializes. The trip is a likelihood for them to see memorable sites while they still can.
In one other 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 within the face of setbacks large and small, a habit that might prove useful as their eyesight continues to diminish. (Her oldest boy, Leo, 9, doesn’t have the condition.)
Ms. Lemay said she also hoped the trip would force her children to understand how lucky they’re in a world where lots of their peers should not have electricity of their homes, books of their schools or other comforts that individuals in wealthy countries take without any consideration.
“I would like them to take a 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 close-by swimming pool. “Not the little problem with their eyes.”
The prognosis
Retinitis pigmentosa encompasses a gaggle of hereditary disorders that affect an estimated one in 3,000 to 4,000 people worldwide, including as many as 110,000 in america, in keeping with the National Organization for Rare Disorders, a nonprofit in Massachusetts. It causes slow degradation of the retina, and the symptoms can develop over many years.
Individuals with retinitis pigmentosa typically begin to lose their vision during childhood. In the following phase of the disease’s progression, they begin to lose their peripheral vision, making it hard for some children to play sports or to avoid bumping into their classmates within the hallways, said Alfred S. Lewin, a professor emeritus of molecular genetics and microbiology on the University of Florida in Gainesville.
In advanced stages of the condition, their vision becomes so impaired that they’re considered legally blind, though most don’t completely lose their ability to detect light, Dr. Lewin said. But several promising latest experimental therapies are in human clinical trials and could possibly be approved in the following few years, potentially helping many children and young adults with the condition avoid blindness, he added.
For now, existing therapies may help slow the progression of the condition, said Lin Bin, a professor of optometry at Hong Kong Polytechnic University.
“These treatments should buy time for the patients for brand new research breakthroughs and latest and simpler treatments,” he said.
Facing reality
Ms. Lemay said that while she and her husband were cautiously hoping for a breakthrough treatment, they didn’t need to set themselves or their children up for disappointment.
“If a latest treatment comes, good, we’ll be super completely satisfied,” 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 wish our kids to simply accept their situation and learn find out how to make one of the best of it.”
At this early stage, the kids don’t talk much about their eyesight, and so they occasionally even crack jokes about their condition, Ms. Lemay said. The one reason she has been discussing it a lot currently is because reporters keep calling to ask in regards to the round-the-world trip.
“It’s not something sad in our family,” she said. “It’s just something that’s going to occur, and we’re going to face it.”
At the identical time, she said, it may possibly be hard to debate retinitis pigmentosa along with her children, especially Laurent, who doesn’t yet understand its full implications. “How am I going to cross the road?” he asked her this summer because the family drove through the Mongolian Steppes in a Russian-built van. “Will my wife be blind?”
One other time in Mongolia, Ms. Lemay was gazing on the Gobi Desert’s night sky when she remembered that her three children who’ve the condition cannot see stars due to their night-vision loss. She didn’t trouble to wake them up.
Seeing the sites
Ms. Lemay said that the trip up to now had been loaded with adventure and serendipity, and that her children never appeared to develop into bored.
Their journey began with a three-month, coast-to-coast, overland trip across 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 hawk bananas.
After a month in Turkey, the family traveled to Mongolia and spent greater than a month on a road trip through the countryside, staying in yurts and eating boiled mutton.
The youngsters loved that, too, even when the bathroom facilities along the way in which ranged from “abominable to bearable,” as Ms. Lemay put it on her Facebook page. Her daughter, Mia, enjoyed riding horses a lot that she cried tears of joy. And though Mia and two of her brothers can now not see stars, they enjoyed taking a look 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 in every of the kindest he had ever met.
“It really hurts me after I take into consideration them losing their vision,” he said of the three children with the attention condition. “But there’s at all times hope; there could possibly be a miracle.”
Ms. Lemay, who works in health care logistics, said her family planned to spend the following two months island-hopping across Indonesia by boat and bus. From there, they intend to go to Malaysian Borneo, Thailand, Cambodia and Vietnam, with a possible stop in Hawaii on their way back to Canada. Nevertheless it’s all subject to vary: Their itinerary is fixed only a couple of month prematurely.
Among the many surprises up to now, Ms. Lemay said, is the way in which her children are likely to fixate on things that appear peripheral to whatever their parents had planned to indicate them, reminiscent of stray cats and dogs, or a tiny beetle they spotted at the bottom of a colossal red sand dune in Namibia.
“Hey, we got here all the way in which around the globe to see that, and also you’re taking a look at a bit of bug?” Ms. Lemay said she asked them on the UNESCO World Heritage site.
“But when we hearken to them,” she added, “they show us that there’s beauty all over the place.”
