This will be a spiritual journey for my wife and I, but it will have an added dimension . . . we are walking for a cure to Usher Syndrome!
From May 20 through 27, my wife and I will make a pilgrimage to Rome along the Via Francigena. This 10th Century pilgrims’ road stretches from Canterbury, England, all the way to Rome. That’s a long walk by modern standards – about 1,000km through France, Switzerland, and Italy – and would take at least two months to complete! So, we’ll pick the trail up in Bolsena, Italy, and walk about 140km to St. Peter’s Basilica in Rome.
This will be a spiritual journey for us, but it will have an added dimension . . . we are walking for a cure to Usher Syndrome! Inch by inch, we will carefully pick our way over rocks, ford small rivers, and sometimes cross busy roads filled with Italian drivers (maybe the most dangerous aspect!). We will walk for Usher Syndrome. Every step we take on this journey will help us MARCH FORWARD toward a CURE of the most common cause of deaf/blindness in the United States! All your generous donations will go only toward The Hear See Hope Foundation, an organization that is dedicated to raising and giving out funds to research institutions so that the cure for Usher Syndrome could be found. And 100% of your donation will go for research.
For a little bit about ourselves: Maggie and I have been married 32 years. We have four beautiful children who are now adults. Maggie is a retired special education teacher and I’m a retired software developer. And, by the way, I have Usher Syndrome. I was born deaf with profound sensorial hearing loss and experienced adolescent-onset blindness caused by retinitis pigmentosa, a symptom of Usher Syndrome.
Having Usher Syndrome is a lifelong disability that changes our body over time. I entered the world in silence, others experience the isolation more slowly, but we all struggle with hearing loss throughout childhood. Upon reaching adolescence we gradually lose our precious vision. Our peripheral vision becomes gradually more and more narrow, diminishing to only a few degrees. We see you and the rest of the world through a keyhole. We often stumble into people and things. Others are often perplexed and annoyed, because it seems we could see, so they ask why are we bumping into them? We fear darkness. When we step outside, nothing seems to be there except for a hand to hold, or a flashlight to guide our way. We fall more often than not. Staying balanced and walking a straight line pushes our vestibular system to the limits. The hardest part about all of this is losing our ability to communicate with you, our loved ones, and the world around us. Usher Syndrome affects so many!