Canadian family circles the globe before children lose vision
HURIN EIN
It is through these visual memories that the couple hopes will be forever etched into the minds of their children, for one day they will lose completely lose their vision.
Three of their kids, Mia, 12 Colin, seven and Laurent, five have been diagnosed with retinitis pigmentosa, a rare genetic condition which diagnosed will cause a progressing loss or decline of vision.
However, their other son Leo, who is now nine was given all the clear.
Symptoms usually began in childhood and in most cases, affected individuals would lose most of their sight.
The couple who have been married for 12 years told CNN that their eldest daughter Mia was only three years old when she started showing symptoms.
Over the years, Colin and Laurent also started developing similar symptoms in 2019.
Lemay said there was yet to be a cure or an effective treatment to slow down the progression of retinitis pigmentosa.
"There's nothing you can really do. "We don't know how fast it's going to go, but we expect them to be completely blind by mid-life," she said.
Not choosing to dwell on the illness and letting the days of their kids drain away without knowing the depth of beauty this world holds, she and her husband soon began making plans to spend a year travelling around the globe with their kids.
"I thought, I'm not going to show her an elephant in a book, I'm going to take her to see a real elephant.
"And I'm going to fill her visual memory with the best, most beautiful images I can," she said.
Travelling was never a wonder for the couple as they have been doing so way before parenthood and they have also made their children travel buddies on some of their trips.
Initially, going on a year-long and worldwide family trip did not seem possible for them but the diagnosis shadowing their lives coupled with Mia’s specialist suggesting for her to be engrossed with “visual memories”, solidified their plan to their children’s world tour.
"With the diagnosis, we have an urgency," Pelletier who worked in finance said.
"There's great things to do at home, but there's nothing better than travelling, not only the scenery but also the different cultures and people," he said.
Their travel budget received a boost when the company Pelletier worked for which he also had some shares were bought.
"That was like a little gift from life," Lemay who worked in healthcare logistics added.
"Like, here's the money for your trip," she said in delight.
With their budget propelled, the family set off for the trip. The first checkpoint of their world tour started in Namibia and visited the rich wildlife, seeing elephants, zebras and giraffes in the flesh instead of behind screens of National Geography or the Discovery channel.
The family then moved to Zambia, Tanzania and flew to Turkey for a month.
After which, they started closing in the Asia continent starting with Mongolia and moving towards Indonesia.
"We're focusing on sights and a lot of fauna and flora. We've seen incredible animals in Africa but also in Turkey and elsewhere.
"So, we're really trying to make them see things that they wouldn't have seen at home and have the most incredible experiences," Pelletier said.
The initial plans of the trip were to start off in July 2020 when they wanted to travel to Russia by land and spend some time in China.
However, setbacks were brought in through delays by travel restrictions due to the Covid-19 pandemic and their travel itinerary has been revised multiple times.
When they finally took off from Montreal in March 2022, a few plans were waiting to be checked off from their bucket list.
Lemay said their first-born Mia wanted to do some horseback riding while Laurent wanted something more complex, drinking juice atop a camel.
“It was really specific and very funny at the time,” Lemay commented on her son’s demeanour.
She said although they had plans equipped for the trip, they did not have a specific itinerary to follow and instead, they plan as they go, going wherever the wind takes them.
Pelletier hoped that this trip would not just supply beautiful sights to their children but also wished for them to develop strong coping skills along with it. Lemay was also eye-to-eye with her husband on this.
"Traveling is something you can learn from. It's nice and fun but it also can be really hard.
“You can be uncomfortable. You can be tired. There's frustration. So, there's a lot that you can learn from travel itself," she said.
Ever since their lives had been haunted by retinitis pigmentosa, Lemay said the children, especially the younger ones have been starting to ask them the difficult questions.
"My little one asked me, Mommy, what does it mean to be blind? Am I going to drive a car?'" Lemay said.
Adding that although he was just a five-year old child, he was starting to grasp the harsh reality surrounding him.
"It was a normal conversation for him. But for me, it was heart-wrenching," she said.
Mia had known of her condition since she was seven and the second eldest, Leo said that his siblings' genetic condition had always been “a fact of life”.
The couple hoped that with all the exposure their children have been getting from this trip, despite the fact that they were challenged with a major health condition, they would still realise how incredibly fortunate they were.
“No matter how hard their life is going to be, I wanted to show them that they are lucky just to have running water in their home and to be able to go to school every day with nice colourful books,” Lemay said.
Still having visual experiences as their top priority, another part of the big trip was Lemay wanting to show “something different” to the kids and relishing them with life experiences. She added that the children had been very curious and easily adapted to life on the road pretty easily.
"They easily adapt to new countries and new food. I'm very impressed with them," she said.
Regular updates of their trip have been chronicled on their Facebook and Instagram accounts and they have been engulfed in massive positive responses from those who have been diagnosed with retinitis pigmentosa themselves or have a loved one with the same condition.
These people reached out to the family in support and gave words of encouragement. A particular response that the family thought was very moving was one among their 11,000 Facebook followers who was a teacher at a specialist school in Quebec for visually impaired students.
Lemay said the teacher on a weekly basis would access their Facebook page and describe or read out aloud to the students on the family travels and experiences.
"And somehow they're kind of part of the trip with us. To be able to share this with other people is a really nice gift that I'm really grateful for.
“That makes me really happy," she said.
Both Lemay and Pelletier have been dismayed by the diagnosis of their children and it was something that will always remain at the back of their minds but they chose to be resilient and enjoy living in the moment and moving towards channelling their energy to positive things.
Pelletier said the priority now was to cater to their children so that they will be able to live this experience to the fullest.
"We never know when it can start or how fast it can go," he said. The family were planning to return home to Quebec next March but at the same time, thinking too far ahead was not on their main agenda.
The key takeaway for the family from this trip is to live in the moment.
"This trip has opened our eyes to a lot of other things, and we really want to enjoy what we have and the people that are around us," Pelletier said.
"If that can continue when we go back even in our daily routines, it will be a really good accomplishment," he said.
Deep down, the couple hoped that Mia, Colin and Laurent would not completely lose their sight but for now, they will be trying their utmost best to equip their children to be ready for any future challenges in life.
Pelletier put his hope that one day, science was to find answers for this uncurable condition.
"We cross our fingers for that. But we know that it might happen so we want to make sure our kids are equipped to face these challenges," he said.
Currently, the kids were also being homeschooled by their parents along the trip and both Lemay and Pelletier agreed that the bond between the siblings has been stronger than ever.
"They're great together," Pelletier said.
"Over and above, I think it helps solidify that link between them. And hopefully, that will continue in the future so that they can support each other," he said.
