Canadian couple Edith Lemay and Sebastien Pelletier initially noticed that their eldest daughter Mia, among four children, was having vision problems when she was only three years old, reports CNN.
A few years down the line a specialist diagnosed her with a rare genetic condition - retinitis pigmentosa - which causes loss of vision over time.
At that point, the couple also noticed that their sons Colin, now seven, and Laurent, now five, have been undergoing symptoms similar to those of Mia’s.
The two boys were ultimately diagnosed with the same genetic disorder in 2019, only their son Leo, now nine, received the all-clear diagnosis from the specialist.
The couple who have been married for 12 years confirmed the details to the media.
Elaborating that there is no immediate cure or treatment available for slowing down the process of retinitis pigmentosa, Lemay said: "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."
When the couple grasped the reality of the diagnosis Lemay and Pelletier began helping the children develop the necessary skills they will require to live their lives.
Lemay eventually came up with the idea of touring at the suggestion of Mia’s specialist regarding making their “visual memories” immersive. "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 claimed.
Lemay and Pelletier traveled together often before they became parents and they had taken their children on various trips but vacationing with the kids was not practical.
The parents soon made plans to travel around the globe in one year
"With the diagnosis, we have an urgency. There are great things to do at home, but there's nothing better than traveling. Not only the scenery but also the different cultures and people,” added Pelletier, who works in the finance industry.
They began attempting to build up their savings for travels which in turn gained an increase when the company Pelletier worked for and owned shares in was acquired. Lemay, who works in healthcare logistics called the situation a “gift from life”.
The family of six was scheduled to set off in July 2020 with plans of travelling across Russia by land and being able to spend time in China too.
However, the global pandemic caused them to restrategize their plans by postponing their schedule. They ultimately left Montreal for their travels in March 2022.
"We actually left without an itinerary. We had ideas of where we wanted to go, but we plan as we go. Maybe a month ahead," said Lemay.
The family came up with a bucket list of experiences for their travel involving Mia wanting to try horseback riding and Laurent wanting to drink juice while on a camel.
"It was really specific and very funny at the time," Lemay added.
They initiated their trip in Namibia, where they went close to elephants, zebras and giraffes, before visiting Zambia and then Tanzania. Later they flew to Turkey and spent a month. The family then headed to Mongolia, before proceeding to Indonesia.
"We're focusing on sights. We're also focusing a lot on 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,” explained Pelletier.
The parents hope that the children will garner survival skills through their traveling experience too aside from strengthening their knowledge skills.
Retinitis pigmentosa symptoms usually start from childhood, and most diagnosed people eventually lose the majority of their sight, as per the National Eye Institute – an agency of the US Department of Health and Human Services.
Keeping in mind that Mia, Colin and Laurent will likely have persistently readjust following the worsening of their eyesight, Lemay said: "They're going to need to be really resilient throughout their life."
"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," Lemay added.
Mia, now 12, knew about her condition since she was seven while Colin and Laurent have been asking the hard questions after recently finding out about themselves
"My little one asked me, 'Mommy, what does it mean to be blind? Am I going to drive a car?' He's five. But slowly, he's understanding what is happening. It was a normal conversation for him. But for me, it was heart-wrenching.” said Lemay.
Their second eldest child, Leo, has grasped that his siblings' genetic condition will be "always a fact of life”.
Lemay and Pelletier hope that the children will recognize the privileged opportunity they are receiving even though their lives will become harder as their vision worsens.
"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 colorful books," added Lemay.
"They're super-curious. They easily adapt to new countries and new food. I'm very impressed with them," she said
The mother said that despite the priority on their visual experiences the trip turned into displaying divergent and memorable experiences to the children regardless of where they choose to visit as surprising the kids is important to them.
The family has been documenting their trip via social media by posting consistent updates on their Facebook and Instagram accounts.
Lemay said that people who have experienced retinitis pigmentosa reached out to her to reassure her. A teacher at a specialist school blind or visually impaired in Quebec follows them on social media and talks to her students about the family’s adventures.
"Every week, she opens the Facebook page and describes all the pictures or reads whatever I'm writing. 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," says Lemay.
Lemay and Pelletier are currently and primarily concerned with focusing on the positive aspects by “living in the moment” despite the diagnosis lingering in their minds.
"We never know when it can start or how fast it can go. So we really want to take this time as a family and to cater to each of our kids to be able to live this experience to the fullest," adds Pelletier.
The family is scheduled to return to their home in Quebec next March for now. "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. If that can continue when we go back, even in our daily routines, it will be a really good accomplishment," said Pelletier.
The children are also being homeschooled while travelling and the parents are pleased to witness a growing strength in their bond as siblings.
"They're great together. 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,” the father added.
The parents however hope for Mia, Colin and Laurent to never go blind.
"Hopefully, science will find a solution. 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,” said Pelletier
