THE WORLD'S NOT ENOUGH

What do you do when you come to know that three of your four children will eventually go blind? You take them ona world tour before a rare genetic disease gets them

- NIRMAL JOVIAL

Since March 2022, Canadian couple Edith Lemay and Sebastian Pelletier and their four children have been on the move, taking in sights and sounds as they tour the world. From the dunes in Namibia and valleys in Kilimanjaro to dancing with the Maasai tribals in Tanzania, hot-air ballooning in Turkey and dressing up as a nomadic reindeer herder in Mongolia, it has not been merely a travel for leisure but one with a purpose. For Lemay and Pelletier, this journey is all about creating visual memories for their children. Memories-snapshots of our lived experience-are essential as they help connect our past with our present and prepare us for the future. And, Lemay and Pelletier are hoping these visual memories, carefully curated by them, may come handy for the children when they face the dark days ahead.

"Three of my children have retinitis pigmentosa (RP), a genetic disease without any cure as of now," Lemay told THE WEEK over a Zoom call from Thailand. "Our eldest kid, Mia, is 11 now. Then there is Leo, who is nine, Colin, who is seven, and Laurent, who is five. Leo is the only one who is not affected by RP."

Retinitis pigmentosa is a group of rare eye diseases that affect the retina. It makes cells in the retina break down slowly over time, causing vision loss. It is a disease that people are born with. Symptoms usually start in childhood, and most people eventually lose most of their vision. The retinal cells called rods and cones die in patients with RP because of a mutation in one of their genes. In a majority of cases, rods mainly located in the outer regions of the retina and responsible for peripheral and night vision-die down first. When more centrally located conduits also get affected, the patient with RP would face loss of colour perception and central (reading) vision, too.