Family Travels The World Before Three Children Lose Their Sight

A doctor gave Edith Lemay and her husband devastating news about three of their children. They could spend years waiting for medicine to change the outcome, or they could start making memories while their children could still see them.

They chose the second option. What followed was a 13-country adventure involving elephants, hot-air balloons, mountain trekking, surfing, safaris and a train journey through Africa.

The Diagnosis Changed Everything For The Family

Lemay was sitting in a specialist’s office in Montreal when she heard the sentence no parent wants to hear. “Well, your kids are going to be blind, but we can’t do anything about it,” she recalled the doctor telling her.

Three of her four children had inherited a genetic mutation linked to retinitis pigmentosa, a group of inherited eye disorders that gradually damage the light-sensing cells inside the retina.

There was no surgery that could fix it and no treatment available to stop the progression for her children.

Lemay’s first instinct was to act. “Whenever problems (arise) my way to cope is just to get into action,” she said. The diagnosis had taken years to reach after her daughter Mia began experiencing problems seeing in the dark.

Mia’s Symptoms Started At Night

 

 

 

 

 

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Mia was three when her parents first realized something was wrong. She would get out of bed at night and repeatedly walk into furniture around the house.

“We realized that something was wrong with her vision because during the night she would get up and start bumping into furniture,” Lemay said. Optometrists eventually referred the family to ophthalmologists, and genetic testing was ordered.

It took almost two years for the results to arrive. Mia was seven when doctors finally confirmed that she had retinitis pigmentosa, leaving her parents facing a diagnosis neither family had expected.

“Our first reaction was disbelief and shock,” Lemay said.

Then Her Two Younger Brothers Tested Positive

The family received another painful update in 2019 when Colin and Laurent, the two youngest children, were also found to carry the same mutation. Their older brother Leo did not have it.

For Leo, the news brought conflicting emotions. He knew he had avoided the condition, but he also understood that his brothers and sister were facing eventual vision loss.

“I feel lucky that I don’t have [it], but sad that my brothers and sister will lose their vision,” Leo said.

The parents now knew that three of their four children could eventually lose their sight. They were also given practical advice about helping the children build visual memories while they still had their eyesight.

That advice would inspire a much bigger plan.

They Wanted Their Children To See The Real World

Doctors encouraged the family to give the children as much visual imagery as possible through photographs and books. Lemay decided that pictures alone were not enough.

“You know just put as much imagery in her head as you can,” she recalled being told. Her response was straightforward: “I’m not going to show her an elephant in a book, I’m going to take her to see a real elephant.”

Her husband, Sebastien Pelletier, immediately supported the idea. “For us, it was just an obvious thing. Let’s take them around the world and go all in,” he said.

The family began planning an enormous journey that would allow the children to experience the sights they might one day struggle to see.

A Pandemic Delayed Their Dream By Two Years

The family originally planned to leave in July 2020, but the COVID-19 pandemic forced them to postpone the journey. Border restrictions also meant Japan, which had been part of their plans, had to be abandoned.

Finances presented another potential obstacle until Pelletier’s company was bought out. The money from the deal helped make the trip possible, and Lemay described it as “a little gift from life.”

The children were asked what they wanted to see, producing answers that Lemay described as “really specific and very funny at the time.” When the family finally left Canada in March 2022, they had chosen flexibility over a tightly organized schedule.

“We actually left without an itinerary,” Lemay said.

Thirteen Countries Filled Their Family Album

The family spent 13 months traveling through 13 countries, creating the kind of memories that could never be replicated by a photograph or a book.

They traveled through Namibia, where the children saw elephants and giraffes in the wild, before continuing through Zambia and Tanzania. They also crossed Tanzania on a slow train, giving the family another way to experience the landscape.

Turkey became another major stop, with the family spending a month there. Laurent celebrated his fifth birthday beneath the famous hot-air balloons of Cappadocia.

“It was like a big lantern rising all around us,” Lemay said.

The journey continued through Mongolia, where the children encountered horses and vast open grasslands. They completed a nine-day trek in the Himalayas, went surfing in Indonesia and visited Egypt.

The family had plenty of memorable experiences, including:

• Wildlife: Elephants, giraffes, horses and safari experiences became part of the children’s visual memories.
• Adventure: The children trekked in the Himalayas and went surfing in Indonesia.
• Culture: The family spent a month in Turkey and traveled through Mongolia and Egypt.
• Family milestones: Laurent celebrated his fifth birthday surrounded by Cappadocia’s hot-air balloons.

There Were Plenty Of Scary Moments Too

The journey was far from a perfectly controlled family vacation. Pelletier suffered a serious allergic reaction in Borneo and needed an EpiPen.

Laurent also developed a wound in Tanzania that became infected and required antibiotics. The family had to deal with unfamiliar food, different hygiene conditions and language barriers as they moved between countries.

Despite those challenges, Lemay said the children adapted remarkably well to their surroundings. “It was amazing how they adapted to any situation, whether in terms of food or hygiene conditions, we could sleep anywhere and there was never a problem for them,” she said.

Language also proved less important than expected. “The language barrier, to play soccer, it does not matter,” Lemay said.

Pelletier believed giving the children some independence was part of the experience. “You need to leave the kids as much leeway as you can. So that’s when they learn. They learn what’s dangerous, where their limits are,” he said.

Retinitis Pigmentosa Can Slowly Take Away Vision

Retinitis pigmentosa refers to a group of inherited disorders affecting the retina, the light-sensitive tissue at the back of the eye. The condition affects roughly one in 4,000 people in the United States.

The disease often begins with difficulty seeing in low light because rod cells are affected first. That can explain why one of the earliest signs was Mia repeatedly walking into furniture at night.

As the disease progresses, peripheral vision can narrow. In some cases, color vision and central vision can also become affected as cone cells deteriorate.

Progression varies significantly from person to person, meaning doctors cannot provide an exact date when someone will lose their sight. One gene therapy, Luxturna, has FDA approval, but it targets a specific mutation and applies to only a small fraction of people with retinitis pigmentosa.

For Mia, Colin and Laurent, doctors expected total vision loss around midlife. Their parents therefore faced a future they could not control medically.

“We have hope, but we don’t want to live waiting for a cure,” Lemay said.

They Came Home With A Different Kind Of Treasure

The family returned to Quebec on April 8, 2023, after more than a year on the road. Their journey later became a book and inspired “Blink,” a National Geographic documentary directed by Edmund Stenson and Daniel Roher.

Yet Lemay has made clear that publicity was never the purpose of the trip. “We’re not influencers, we do not advertise,” she said.

What she wanted was for other parents facing difficult circumstances to recognize that their families could still create meaningful experiences.

“We just want parents to realize that no matter how bad the situation is, there’s always something good left in this situation,” Lemay said.

Pelletier expressed the same idea directly to his children. “What we’re trying to show them is that your world is going to be different, but it’s your own to make,” he said.

The family could not stop the genetic condition affecting three of their children. What they could control was what happened before the future arrived, and they filled that time with experiences their children could carry with them long after the view itself was gone.