Family Goes On World Tour Before The Kids Become Blind From Rare Condition Without Cure

A Heartbreaking Diagnosis

The eldest daughter Mia is only twelve years old, but she was the first of her siblings to know that something was wrong. When she was just three years, her parents noticed some warning signs:

"During the night she would bump into furniture or a wall. At first, we did not think anything of it. After a while we realized something was wrong," her mom explains. Once that persisted, they took her for multiple tests and she was eventually diagnosed with retinitis pigmentosa, a degenerative hereditary retinal disease.

The Process Of Losing Sight

"What happens is the retina is slowly dying, and she loses cells from the outside to the inside," says the mom, Edith. "Her field of vision will diminish slowly. They don't know how fast it will go, if she will lose it completely or if she can keep some of it. Time will tell."

Sadly two of their sons Colin, now 7, and Laurent, now 5, were also diagnosed with the disorder. Yet, Leo, now 9, did not inherit the condition like his siblings. Unfortunately, there is no cure for the condition.

Creating "Visual Memories"

However, even in the darkest times, there is 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 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.

Losing Hope

The family was in complete shock when they first received the news. Their whole vision of their kids growing up healthy ad 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 planned for your 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 to be able to do anything," says Edith.

The Time Is Now

The family had no idea when exactly the kids would become blind. Although it was predicted it would happen midlife, 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 Kids Barely Understand What It Will Mean

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 of the news. There is 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 explain that the younger siblings, 7 and 5, ask, challenging questions like "what does it mean to be blind? Am I going to drive a car?" At five years old, he has no idea what is coming for him: slowly, he's understanding what's happening. It was a normal conversation for him. But for me, it was heart-wrenching," adds Edith.

Checking Off The Bucket List

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 have 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.

Seeing The World, One Animal At A Time

The family has goe far and wide already. They started their journey in Namibia, where 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 embraced 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 to the details for as long as possible.

Fostering Gratitude Even In Hardship

The family may always remember how difficult it will be for three of the siblings to eventually go blind, but they are 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 are lucky just to have running water in their home and to be able to go to school every day with nice colorful books."

The Clock Is Always Ticking

The family does' know exactly 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."

For now, they cherish every moment, reminding us that anything can happen at any point, so we must make the most of our blessings at every second: "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."

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