Retinitis pigmentosa is a degenerative eye condition that slowly destroys the retina, the light-sensitive tissue at the back of the eye. For Canadian couple Edith Lemay and Sebastien Pelletier, this has meant coming to terms with the fact that the three of their four children diagnosed with the condition will eventually lose their sight. And rather than waiting for the inevitable, the couple has decided to make sure their children see as much of the world as possible before their vision deteriorates.
Lemay and Pelletier first noticed vision problems in their eldest daughter, Mia, when she was three years old. A few years after they began seeing a specialist, Mia was finally given the diagnosis: retinitis pigmentosa.
What Is Retinitis Pigmentosa?
Retinitis pigmentosa (RP) is a rare and untreatable genetic eye disease wherein the cells in the retina, the light-sensitive tissue at the back of the eye, slowly break down over time. Retinitis pigmentosa causes progressive vision loss, and most people diagnosed with retinitis pigmentosa will eventually lose all or most of their vision over time.
Childhood Diagnosis
Most people with RP are diagnosed in childhood. Initial symptoms typically include the following:
- Loss of night vision
- Difficulty adjusting to dim light or navigating in the dark
- Sensitivity to bright light
- Loss of color vision
RP is a genetic disorder that is passed from parents to children. RP can occur on its own, or along with a different genetic disorder, such as Usher syndrome. Less commonly, RP can be caused by certain medications, infections, or eye injury.
By the time Mia was diagnosed with RP, Lemay and Pelletier had already also noticed that two of their sons, Colin and Laurent, were exhibiting the same symptoms as Mia. The two boys were officially diagnosed in 2019. Their son Leo, the eldest of the boys, does not have the disease.
After experiencing the stages of grief that accompanied the understanding that three of the couple’s four children would eventually lose their sight, Lemay and Pelletier decided to take action. They knew there was nothing they could do in terms of treatment — retinitis pigmentosa does not have a known cure or treatment — but they wanted to help equip and prepare their children for the future.
Their breakthrough came when a counselor suggested that one of the best things the couple could do was to provide their children with as many visual experiences as possible while they still had sight. The counselor suggested exposing the children to as much imagery as they could, making sure that the children saw pictures of, for example, elephants and giraffes in picture books so they could remember those pictures even as their vision deteriorated later on. But Lemay and Pelletier decided that pictures of elephants and giraffes in books wouldn’t do. They wanted to show their children the real thing.
“I thought, ‘I’m not going to show [them] an elephant in a book, I’m going to take [them] to see a real elephant,” Lemay explains. “And I’m going to fill [their] visual memory with the best, most beautiful images I can.”
Thus began the family’s journey around the world. After initial delays due to the COVID-19 pandemic, they officially set off from Montréal in March 2022 with a lot of ideas for where their travel will take them but no set itinerary.
So far, the family’s trip has taken them to Namibia, Zambia, Tanzania, Turkey, Mongolia, and Indonesia. Their ongoing trip, planned about a month at a time, is focused on bucket list items and major visual experiences. “We’re focusing on sights,” explains Pelletier. “We’re also focusing a lot on fauna and flora. We’ve seen incredible animals in Africa, but also in Turkey and elsewhere . . . We’re really trying to make them see things that they wouldn’t have seen at home and have the most incredible experiences.” The couple also hope that, along with unforgettable family memories and visual experiences, the children’s exposure to travel will help equip them with coping skills to prepare them for the future.
At the same time, they remain hopeful that their children may never lose their vision completely. “Hopefully, science will find a solution,” Pelletier emphasizes. “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.”
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