Family Opts to See the World Before Their Children Lose Sight

These Kids Are Going Blind, But They’ll See More of the World Than Most of Us See in a Lifetime

What would you do if you found out that your child was going to go blind because of a genetic illness? Would you spend years looking for a cure? Grieve for months at everything they’d miss? Refuse to believe it and goon with life as usual? Well, one set of parents who received such news has decided to make sure that their kids see more than most of us ever will.

What Would You Do?

Imagine if your child’s doctor told you that your child was going blind and that there was nothing that could be done about it. Many of us would face various stages of grieving, ranging from disbelief to anger, bargaining, and more. Most of us don’t even want to think about it.

You’d likely be devastated by knowing that there are so many things that your child would never get to see. I know I would. But these Quebec parents have decided to face that reality with an exciting and brilliant adventure. They’re taking their kids to see the world before they lose their vision.

Devastating Diagnosis

For Edith Lemay and Sebastien Pelletier, the news was at first shocking and sad. It all started when their oldest child was just three years old and began to show signs that she was having vision issues.  In 2018, 11-year-old Mia was diagnosed with a rare genetic condition called retinitis pigmentosa.

While this only affects night vision and peripheral vision at first, those who suffer from this condition will experience gradual vision loss and then blindness. While not all who have this condition will go completely blind, many of them will.

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

It Started Off Slowly

Mia’s first symptoms were not that distressing. She would occasionally bump into the wall or a piece of furniture, but her parents didn’t think it was that serious. Once it became obvious that something was wrong, they immediately took Mia to see an ophthalmologist.

Although this is an inherited or genetic illness, the parents said that no one in their families had shown any symptoms before. They had absolutely no idea that they were both carriers of the condition before Mia’s diagnosis. “There was no history in either family,” Edith explained.

Although there was only a “one-in-four chance” of them passing this condition on to any of their kids, they, unfortunately, transmitted it to three of their four children. Five-year-old Laurent, seven-year-old Colin, and nine-year-old Leo were all tested after Mia’s diagnosis. Leo is the only one who does not suffer from retinitis pigmentosa.

“Let’s Go On An Adventure!”

While many of us would spend at least six months grieving over such news, this family met the overwhelming news with a brilliant plan. After being advised by an expert to keep the kids busy with “visual memories,” all six of them are spending the next half-year traveling all over the world before returning to their home in Canada.

Sebastien shares that they felt some urgency to begin their trip as soon as possible after the diagnosis. "There's great things to doat home, but there's nothing better than traveling. Not only the scenery but also the different cultures and people," he went on to say. Covid delayed the trip a bit, but they’ve been seeing amazing things for months now.

These kids and their incredible parents have already enjoyed a good bit of travel. In July of 2021, they toured eastern Canada. In March of2022, it was off on a global tour of Namibia. They have also seen Mongolia, Indonesia, and other exciting sites and locations.

Sebastien shares, “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.”

He explains that although the diagnosis says that their kids will likely be blind by middle age, they hold on to hope that science will find a successful treatment for this 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 pointed out. So, they prepare for the worst and hope for the best. In the meantime, this family turns their lemons into lemonade.

You can follow their wonderful adventures on their Facebook and Instagram pages.