(NewsNation) — Only one out of every 4,000 people get a rare degenerative condition called retinitis pigmentosa, which can lead to blindness. In one Canadian family, three out of four children were diagnosed with the condition.
Now, they’re traveling the world to see as much as they can before they lose their sight.
Edith Lemay and her husband, Sébastien Pelletier, have a 12-year-old, Mia, who has known about her retinitis pigmentosa for some time now. Mia’s brothers, Colin and Laurent found out more recently that a total loss of vision is expected for them sometime in mid-life.Their other child, Leo, has not been diagnosed with it.
“There is no action you can take,” Lemay said. “There’s just no treatment, no nothing.”
Instead of resigning themselves to their fate, the family decided to take a trip around the world for the next year, to give the kids visually rich experiences, The Guardian reported.
“I said to myself, I’m not going to show her an elephant in a book — I’m gonna go show her a real elephant and real giraffes,” Lemay said.
According to The Guardian, since the family flew from Montreal, Quebec, they have gone camping in the desert on the Atlantic Coast and have traveled to Namibia.
Not only is the family making lasting memories, they’re also learning how to readjust to their surroundings.
“We traveled by bus and there’s challenges,” Lemay said. “We’re hungry, we relate to this frustration.”
While the family remains hopeful there will be a solution, for now, they are in Bali, Indonesia, and enjoying their time together.