A Southern Tier teenager wants to see the wonders of the world before he can’t. WENY’s Natalie Abruzzo met with the young man and spoke with him about his medical challenges and hopes for the future.
May 14, 2015
CAMPBELL, NY (WENY) — A Southern Tier teenager wants to see the wonders of the world before he can’t.
He is like any other teenager, into sports, loves hanging with his friends. But unlike any other teenager, he is legally blind and knows his life is about change.
Alex Lehman is a typical 17-year-old. He’s a junior in High School, he likes having fun with his friends and participating in science class. He’s also joined the track team.
“Track, this is my first year, and it’s not, it’s not bad, it’s different definitely, but I’m making a lot of improvements that I can do while I’m out there I’m not much of a runner, I’m built like a runner, but I’m not much of a runner, so I stick to throwing and things like that,” says Lehman.
He has also become quite the actor, starring in Tarzan last fall. Alex fits right in with his peers.
“I have known him since 7th grade and in all those years he has been an absolute great character, a great role model for the other students in class,” said Alex’s science teacher, Chrissandra Palermo.
But Alex is a little different than his classmates.
Alex has Retinitis Pigmentosa, which degrades his peripheral vision giving him tunnel vision. He also Cone Rod Dystrophy, which includes central vision loss, sensitivity to light and night blindness. The overall condition is rare – about 1 in 10,000 people have the combination. The two eye diseases are genetically transferred, meaning that members of his family also carry the diseases. Alex’s mother, Paula, has Cone Rod Dystrophy and two of her siblings and an uncle also have vision loss.
Alex started wearing eye glasses when he was 4-years-old. He was diagnosed with both eye diseases at the age of eleven, but he does not let his sight deficiency slow him down.
Last fall, when Alex met with Dr. Mina Chung, a retinal specialist and professor at the Flaum Eye Institute at the University of Rochester, he learned that he is legally blind. The diagnosis meant that he would not be getting his driver’s license.
According to Palermo, Alex was really upset about not being able to drive. He said it felt as though his independence was going to be taken away from him. She began talking to him about what he wants to do and see before he loses his sight.
“His doctor had given him a timeframe because one of his greatest fears is waking up not being able to see. So he had asked his physician about that and she said that it could be anywheres from a couple of months to two years, but to definitely plan for that happening,” said Palermo.
Research is making strides in gene therapy, Dr. Chung said, “[There are] a lot of strategies for personalized medicine happening right now. Being able to discover that particular person’s genetic makeup and connect that specific thing that’s causing the problem.”
Even with this information, Palermo knew time was of the essence. So, with a post it note and a marker, she jotted down the things that Alex wanted to see. What he chose are some of the most magnificent sights of the world, like the Grand Canyon, the Adirondacks, turtles hatching.
“The turtles hatching on the beach that, that was mostly, that’s something I read about that um not a whole lot of people see in their lifetime, and it’s a really like, it’s really rare occurrence, so, you know, just seeing something really rare, and something like that, it’s gotta be really cool,” said Alex.
“One of the biggest things, is I really wanted to see the northern lights.”
Due to the light deficiency, Alex has never been able to see the stars in the night sky.
He surprised even his mother, Paula Lehman, as she had not expected her son to to choose such grand sights.
“For a kid his age, it’s that’s I don’t believe that as a mom that that’s a normal thing. I would I would think that he would you know, want to go race car events and um, just normal things that boys his age would do.”
Alex’s post it note of wishes soon became a GoFundMe page. And no one expected the crowd sourcing site to get the amount of attention that it has in the past several months.
“It’s overwhelming. The greatest thing I love out of it the donations obviously, but the greatest thing is seeing the comments from other people who really um, just truly magnify his character even more than what I could,” said Palermo.
“The community, the support that they have given, the school itself has given Alex so much support, people that we dont’ know, people from different states,” said Paula Lehman.
The money raised through the site will be used to send the Lehman family on the adventures that Alex dreamt-up and to experience these sights and moments together, starting in the summer of 2015.
And, while Alex is thankful for the chance to see these sights, he has a message.
“Probably the biggest thing is, I want everyone to you know, not take the certain things that they do that you know you wouldn’t even think of that you need sight for for granted.”
Alex will begin braille lessons at school beginning in the fall. This is just one of the many programs and services that the faculty and staff of Campbell-Savona have done To make Alex’s transition seamless.
For more information about how to find out about retinitis pigmentosa and rod and cone dystrophy, check with your doctor and visit National Eye Institute (NEI) at the National Institutes of Health (NIH).
For more information about Dr. Chung’s work or the Flaum Eye Institute, visit University of Rochester Medical Center (URMC) Flaum Eye Institute