“Your children will go blind,” said the doctor. You won’t believe what the parents did next.
Childhood is a period of time full of innocence; children are blank slates full of nothing but good. Yet the sad reality is that their purity doesn’t protect them from life’s harsh hurdles. When these kids found out that they would lose their eyesight completely, they didn’t even fully understand what was happening to them. We take our sight for granted simply because we’re born with it and get to keep it forever, but who would we be without it and how would we survive?
Thankfully, the kids’ parents were ready to give them every tool so when they became blind, they would still survive and live happy lives, and here’s how they did it. Childhood shouldn’t be a time of worry. The memories we form at that age become the core of who we are, what we believe in, how we perceive the world, and why we think the way we do; childhood completely shapes us. If we create a lot of happy memories, we have much higher odds of becoming fully functioning, healthy adults who create happy futures for ourselves. That’s why it was so important for this family that no matter what cards they were dealt, they would make the best of them and live as happy a life as possible.
The children were living normal lives till one day they received devastating news. The eldest daughter, Mia, is only 12 years old, but she was the first of her siblings to know that something was wrong. When she was just three years old, her parents noticed some warning signs. “During the night, she bumped into furniture or a wall,” her mom explains. “At first, we didn’t think anything of it, but after a while, we realized something was wrong.”
Once that persisted, they took her for multiple tests and she was eventually diagnosed with retinitis pigmentosa, a degenerative hereditary retinal disease. “What happens is the retina is slowly dying, and she loses cells from the outside to the inside,” says her mom, Edith. “Her field of vision will diminish slowly. They don’t know how fast it’ll go, if she’ll lose it completely, or if she can keep some of it; time will tell.”
Sadly, two of their sons, Colin, now seven, and Laurent, now five, were also diagnosed with the disorder. Yet Leo, now nine, didn’t inherit the condition like his siblings. Unfortunately, there’s no cure for the condition. However, even in the darkest times, there’s a glimmer of hope. One of the specialists sparked it when she told Edith that the best thing she could do for her children was to create visual memories. This is how their journey to travel the world in a year started. Edith and her husband figured that while the kids still had their sight, they had a chance to teach them the skills that they would need to survive without it.
“I thought, I’m not gonna show her an elephant in a book; I’m gonna take her to see a real elephant, and I’m gonna fill her visual memory with the best, most beautiful images I can,” she said.
The family was in complete shock when they first received the news. Their whole vision of their kids growing up healthy and happy was replaced with fear of how they would cope going through the world with blind eyes and what they would miss out on. “Everything you plan for the future, for your kids, for yourself, you totally need to rethink that,” says Edith.
“The news is just as difficult to deliver by the doctors. They get that diagnosis, their hopes and their dreams change,” said Doug Earle, the president and CEO of Fighting Blindness Canada.
The family had no treatment options, and there was no avoiding the fact that the kids would lose their eyesight. “The hardest part to accept is not being able to do anything,” says Edith. The family had no idea when exactly the kids would become blind, although it was predicted it would happen mid-life but likely be gradual. The time was now. They immediately started making preparations to embark on a mission to see the world with the kids while they still could.
“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,” the parents explained.
The kids are all still very young and aren’t able to grasp exactly what is going to happen to them. The eldest, Mia, is now 12 but was only seven when she first heard the news. There’s no way for her to fully grasp losing one of her five senses, especially with sight being all she has known so far. The parents explained that the younger siblings, aged seven and five, ask challenging questions. “What does it mean to be blind? Am I gonna drive a car?”
At five years old, he has no idea what’s coming for him. “Slowly, he’s understanding what’s happening. It was a normal conversation for him, but for me, it was heart-wrenching,” said Edith.
While losing sight is unavoidable, the family is choosing to take control where they can. They started a travel fund that was supplemented by a gift from the company Pelletier. Despite experiencing an interruption during the pandemic, they’ve started checking off items on their bucket list. The list of vacation adventures includes horseback riding for Mia and sipping juice on a camel for Laurent. The family’s gone far and wide already. They started their journey in Namibia, where they took elephants, zebras, and giraffes out of textbooks and into reality. Then, they traveled to Zambia and Tanzania, where they learned about alternative ways of living and experienced new climates and scenery. Then, they went to Turkey, where they completely immersed themselves in a new culture, staying there for a month.
The family will pursue their journey to Mongolia before continuing on to Indonesia. As they go along, the kids are engraving their surroundings into their memories, hoping to hold on to the details for as long as possible. The family may always remember how difficult it’ll be for three of the siblings to eventually go blind, but they’re working on resilience and gratitude to get themselves through it.
The parents hope that spending time in diverse cultures will show the kids that they are privileged despite the obstacles they will face as they lose their vision. Edith tries to teach her kids the true meaning of gratitude, no matter how hard their life is going to be. “I wanted to show them that they’re lucky just to have running water in their home and to be able to go to school every day with nice, colorful books,” she said.
The family doesn’t exactly know when the hard part will begin. “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,” she said.
For now, they cherish every moment, reminding us that anything can happen at any point, so we must take the most of our blessings at every second. This trip has opened their eyes to a lot of other things, and they really want to enjoy what they have and the people that are around them. If that can continue when they go back, even in their daily routines, it’ll be a great accomplishment.
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