Have time to see the world with your own eyes

This is a story about how the disease changes people's lives and makes them look at the world with different eyes. For two brothers — Toda and Justine Purvis, who was diagnosed with a terrible diagnosis — choroiderma, the phrase "to have time to see the world with your own eyes" has become a life motto. Choroiderma is a rare hereditary disease associated with a mutation of the CHM gene on the X chromosome, as a result of which the retina of the eye slowly atrophies, which eventually leads to blindness. Before they go blind, the Purvis brothers decided to try to see as many of the most beautiful places in the world as possible and began their journey from their native country — the USA.

Over the past few years, 38-year-old Justin and 43-year-old Tod's eyesight has deteriorated significantly. The disease that affected their eyes develops from childhood, but makes itself felt only after 30 years. Choroiderma mainly affects men, since they have only one X chromosome. Currently, this disease is considered incurable. However, British scientists earlier this year gave hope to people with such a disease: using gene therapy, they were able to restore vision to six patients. (Photo: Bulls Press / MEDAVIA.CO.UK )

Choroiderma affects peripheral vision, night vision, depth and color perception. One day the brothers — Tod and Justin Purvis — completely blinded. In 2010, the brothers compiled a list of the most beautiful places in the United States that they would like to visit, and immediately began to implement their plan. They want to have time to see as many beautiful landscapes as possible while it is still possible. In the photo: the Purvis brothers on the background of the Devil's Tower in Wyoming. (Photo: Bulls Press / MEDAVIA.CO.UK )

During the 38-day trip, the brothers were accompanied by a small film crew who made a film about their journey called Driving Blind. (Photo: Bulls Press / MEDAVIA.CO.UK )

"In 2008, when my eyesight began to deteriorate, I was devastated. I went to work, then came home and sat in my apartment. Now I want to go out into the light and see everything while I still can," said Tod, who lives in Los Angeles. (Photo: Bulls Press / MEDAVIA.CO.UK )

Tod added that this trip with his brother "got him out of the house," and the fact that they saw new beautiful places every day "helped him change his approach [to life] to a more positive one." (Photo: Bulls Press / MEDAVIA.CO.UK )

Currently, both brothers have started the so-called "tunnel vision", that is, they see only the central point of the picture, whereas healthy people see it completely. (Photo: Bulls Press / MEDAVIA.CO.UK )

"It's like looking into a long tunnel: you see a light at the end, but the tunnel is covered with mirrors. It's like looking at the world through a static kaleidoscope," describes Tod, a television editor by profession. "Part of the image is simply missing, and your brain is trying to fill the void with colors that it knows," he explains. (Photo: Bulls Press / MEDAVIA.CO.UK )

During his trip to the USA — from New York to Los Angeles — The Purvis brothers visited the Grand Canyon in Arizona, the Devil's Tower in Wyoming, Yellowstone National Park and Niagara Falls. They drove 13,000 miles in a car: Tod was driving, who still had 50% vision. Justin's situation is much worse, he sees only 15% of the picture. (Photo: Bulls Press / MEDAVIA.CO.UK )

At the very end of the trip to the USA, Justin Purvis was officially recognized as blind. (Photo: Bulls Press / MEDAVIA.CO.UK )

"We wanted to see places we had never seen, and to see again the ones we liked. We wanted to "record" as many pictures as possible in our heads," Tod stressed. (Photo: Bulls Press / MEDAVIA.CO.UK )

Tod and Justin visited the Grand Canyon, which was last seen as a child. "This time we rated him much more highly, knowing that we might never see him again." (Photo: Bulls Press / MEDAVIA.CO.UK )

As the brothers said, after a trip to the United States, they do not intend to stay at home. They want to see not only famous places, museums and galleries, but the whole world. (Photo: Bulls Press / MEDAVIA.CO.UK )

Tod is planning an expedition to Alaska, and recently he visited the Galapagos Islands with his wife. "It's very hard for me to know that I won't be able to see my wife's face anymore," he said. (Photo: Bulls Press / MEDAVIA.CO.UK )

The Purvis brothers at the campfire. One day they will be plunged into darkness, and now they are greedily looking at everything that they can still see. (Photo: Bulls Press / MEDAVIA.CO.UK )