San Joaquin natives, and brothers Tod and Justin Purvis knew that one day, they would go completely blind. Faced with an incurable illness, a rare disorder– Choroideremia, the brothers decided to make the most of their reality, and embarked on an adventure.
Choroideremia, is a rare genetic disorder that will one day cause them and thousands of others to lose their sight. According to the Choroideremia Research Foundation (CRF), one in 50,000 people inherit the retinal degenerative disease, which is passed down through the X chromosome – meaning women are carriers. Over time, the progressive vision loss leads to tunnel vision, affects the peripherals and eventually leads to blindness. There is no current cure or treatment for the disorder, and only males suffer the full affects. Though little is known about the disorder or how to treat it, Tod notes that research and knowledge is moving at the speed of light.
With limited time and money, and their eye sight changing drastically, these former San Joaquinians set off on a road trip to see everything they could, and before long, their brother-to-brother trip became a nationally renowned and award winning documentary, directed by Brian James Giffo. So far, the film has been shown at nearly 30 national independent film festivals, and have claimed 17 awards. Altogether, the film has helped to raise more than $70,000 for causes such as the Foundation Fighting Blindness and the Choroideremia Research Foundation.
Their venture led to them to some of the most spectacular sights in America, and would also open people’s eye to those who live in a world that is compressed by Choroideremia. Tod and Justin began their trip to raise awareness and funds for the disease, and for a selfish reason, says Tod, “to see as much as we could.” The documentary showcases the struggles they face in losing their sight, and the realization that they have so much more to gain. The road trip, which began and ended in Washington D.C. after making a full circle around the US in a 2008 Ford Escape, brought them on a 40 day adventure that began in 2010 and still continues to lead them on many travels today. The Purvis’s traveled around the peripheral of the US, which is symbolic for them because their illness progressively affects their peripheral vision. For Tod, accepting his diagnosis was difficult at first. The trip and film helped to bring him out of the depression he spiraled into after his diagnosis. Overall, the experience of traveling and the people he met, along with the awareness he has helped to create, have given him more positivity. “I think the biggest opportunity was meeting so many great people, who I still consider friends to this day.”
With no family history of the disorder, the Purvis’s soon learned about this secret world that exists. “The big thing is that tons of people haven’t even heard of this disease before,” says Tod, who has even met doctors who are unaware of the complete capacity of the disorder. Other than the jaw dropping sunsets, national parks, people and monuments the Purvis’ experienced on their trip, the most memorable for Tod was the Devil’s Tower in Northeastern Wyoming because he had “always wanted to see it since watching Close Encounters of the Third Kind” when he was younger. While it is tough to pick a favorite, other notable stops along their journey was the Grand Canyon, New Orleans and Red Rocks, in addition to Glacier and Zion National Park.
While the sights were the main reason for the trip, Tod says taking the trip with his brother was a bonding experience. The two, who are five years apart and know live in opposite ends of the US, got to know each other again after being in a car together for 40 days. “I knew my brother as a kid, but in our mid 30s and early 40s – it is an interesting, cool and different thing to get to know each other as adults,” he says. Tod says that the experience of opening himself up to the world was overwhelming and frightening. “It’s kind of funny, in a weird way, I think people with a “disability” are ashamed of it. Almost like we did something wrong to deserve this. When really it’s just the luck of the draw,” adds Tod, “I think I’ve confronted it by putting as much of my time, effort and even money into the film and getting it out to as many people as