Three of Edith Lemay and Sebastien Pelletier’s four children were diagnosed with retinitis pigmentosa, an untreatable genetic condition. The parents were told their children would eventually be blind. In trying to process this devastating news, Edith and Sebastien, of Montreal, Canada, experienced shock, grief, anger, and denial, but finally came up with a plan.

The attending doctor, in trying to comfort them, suggested that they show their children pleasant images and create a wealth of memories.

The parents took that advice and decided to show their children real images of the world thus creating beautiful memories.

The Ultimate Distraction

Sebastien told Today Parents they initially felt that there was nothing they could do for their children. But then they realized that they could give their children a truly beautiful visual memory. They could fill their minds with the true beauty of the world.

Their original plan was to take the Trans Siberian train through Russia and China. Those plans were scrapped thanks to COVID-19. Instead, they began the trip as soon as the COVID lockdowns were lifted.

In March 2022 the family left, but this time their schedule was more flexible. Their priority was to take the easiest route and let the children help with the decision.

Since the children were not familiar with various countries, the family relied on the children’s wish lists. For instance, Collin wanted a train ride. The family rode through Tanzania on an old antiquated train so that they could sleep on the train.

Mia wanted to swim with the dolphins and Laurent wanted to drink juice while sitting on a camel. The children were surprised to see how tall giraffes and elephants were.

Mia wanted to ride horses and they rode in Mongolia. Mia loved it so much and was quite emotional about the experience.

Leo enjoyed their hike at Kilimanjaro and the family was excited about their hot air balloon experience in Turkey.

The family is still traveling.

About Retinitis Pigmentosa
The retina, a light-sensitive layer of tissue, is located in the back of a person’s eye. The Pelletier’s three children were diagnosed with Retinitis Pigmentosa, a rare disorder that affects the retina. Its cells break down and cause vision loss. The disease is inherited and usually begins in early childhood.

The children were initially checked by an ophthalmologist who at first was unable to provide the family with a diagnosis. After additional visits and an eventual diagnosis,  the ophthalmologist had to admit that they rarely see evidence of this disease and he did not recognize its symptoms.
The parents then requested genetic testing for their children and for themselves. That is when they were presented with an accurate diagnosis of retinitis pigmentosa (RP) but still no explanation as to why their daughter, Mia, had vision problems.
Their other two children, Laurent and Colin were also diagnosed with the condition. However, Leo, age 9, was spared.
According to the National Eye Institute, RP actually represents more than one condition that can cause deterioration of retinal cells and eventual blindness.
Their ophthalmologist explained that the three children will lose vision “from the outside to the inside with an ever-shrinking field of vision. The doctors said they would not be able to predict how long this would take and expect the progression to be different with each child.

The most the family could hope for would be a slow process of diminishing sight lasting into their middle-aged years. In the meantime, there is always hope and for now, their daylight vision is almost normal.

The family has had to adjust to various night lighting such as holding hands if they walk outside at night. Mia is very sensitive to bright lights. If she is outside on a sunny day she must protect her eyes.

The parents explained that they will not sit around waiting for a cure. They want to see that their children are living a life that will prepare them for the future living with RP.

However, if a cure is developed of course they will be overjoyed but they are not sitting around waiting for that cure. The parents hope that experiencing this type of trip will help their children be more resilient and cope with the challenges they will face later in life.

The children are slated to lose their sight gradually necessitating constant adjustments. They are being taught that focusing on the negatives will not make a situation any better but will make it worse. That if they focus on what is good in every situation, things will be easier for them.