Story by Rodney Tanaka and Jeff Malet
Jacob Santiago was born into a car family. He appeared in a car show when he was a couple of weeks old. His grandfather works on cars in a home garage. Jacob began saving money for a car when he was 5.
“One thing I can say about the Santiago-Thomas families is, it’s all about the cars,” Jacob said. “If you have a car you have freedom.”
But Jacob began having vision problems around the age of 12. He was diagnosed with cone-rod dystrophy, a genetic disease that is robbing him of his sight. He also has stationary night blindness, so he has poor vision in low-light situations.
“When I found out I had an eye disease and I wasn’t going to be able to drive, it crushed me, just like how it would most people. It limits your whole life, and it’s not very fun,” Jacob said. “When they tell you you’re not going to be able to do something you have been looking forward to your whole life, it’s definitely a scary thought. It’s very degrading.”
Jacob, who lives in Highland, became a Western University of Health Sciences Eye Care Institute patient about a year ago through a referral from the Department of Rehabilitation. The goal is to prepare Jacob for college and the workforce, said WesternU College of Optometry Associate Professor Kierstyn Napier-Dovorany, OD, FAAO. The Eye Care Institute has been working to determine the best strategies and devices for Jacob so that he can be successful in his educational career, she said.
Jacob and his family talk about their struggles dealing with other people who want him to diminish his goals because of his visual impairment.
“Plenty of people with a visual impairment are very successful in doing what they want to do,” Napier-Dovorany said. “I don’t feel that Jacob’s visual impairment should hold him back in any way. We need to figure out how to get through the issues he is having with his vision right now so that he can be successful despite his visual impairment.”
WesternU partnered with Sight Savers America to give Jacob a free electronic video magnifier, which magnifies text and allows him to perform everyday tasks at home.
“This is probably the best piece of equipment I've had,” Jacob said. “I use it a lot for papers that are not as big as I would like them to be, and I usually use it at nighttime when I have the least of my vision. It really helps.”
Growing up with a visual impairment is a major lifestyle change, Jacob said. Schoolwork piles up quickly because his vision problems prevent him from completing assignments.
He is not able to play sports, and he misses out on nighttime activities. He stopped playing soccer because, as the disease progressed, he would trip or run into other players because his peripheral vision was deteriorating. He also began falling a lot more while riding his skateboard because he couldn’t see rocks and sticks on the ground.
Going out to eat also poses problems because he has trouble seeing the menu.
“Every day I try to live normally, like a normal child would, but there are definitely other things that kind of impede that when you have a visual impairment,” Jacob said. “For instance, walking to a movie theater. It’s getting to be nighttime because that’s mostly the time we go to the movie theaters. It’s really hard to distinguish certain things in the movie theater or outside of it just walking to it. It depends on what time of day or what the situation is, like if I had a long school day or not.”
His eye disease is unpredictable. He lost vision rapidly early in his diagnosis, but it seems to be slowing down. Cone-rod dystrophy is estimated to affect 1 in 30,000 to 40,000 individuals, according to the U.S. National Library of Medicine.
“As time goes on Jacob’s vision will continue to decrease, but we’re not really sure how quickly or slow or how it’s going to progress,” said Jacob’s mother, Chandra Thomas. “It’s a unique disease. There is not a lot of research on it and not a lot of options. What we do know is his vision loss is degenerative and continues, but we don’t know the rate of speed or anything like that.
“It’s interesting as a mom, having a kid who is visually impaired, because you feel every struggle even stronger,” Thomas said. “There is a lot of negative perception among young people in how they may treat Jacob based on his visual impairment. For example, if he’s using a mobility cane, sometimes people are fearful of that or don’t understand it or they have questions. We’ve had situations before because Jacob is just visually impaired, he’s not blind, where people will come up to him and say, ‘Hey, I can tell you are seeing things, you’re looking at your cell phone, so who did you steal your cane from?’ Sometimes people don’t realize he has an impairment and they think he doesn’t need extra help.”
Thomas wants Jacob to be independent and strong, but she also wants to protect him and serve as his advocate.
“I think it’s my job to advocate for him and make sure he has the tools to be successful. It’s not as easy when you are vision impaired to be successful at school,” Thomas said. “School is set up for a normal, standard environment for normal, standard children. With a vision-impaired student it’s not normal or standard in any way. At times when the fatigue is too great, I need to know when enough is enough. Tonight, he might have a ton of homework and it may be too much for him and he may get a headache and I need to be there to say, ‘OK, let’s stop, we are going to take a break for the rest of the evening. We are not going to use your eyes anymore tonight,’ and so he’ll stop doing homework and do something that doesn’t require eyesight.”
Jacob’s desire to buy a car perfectly encapsulates the balance he and his family are trying to reach when it comes to his disease. Thomas’ first inclination was to not allow Jacob to shop for a car, she said. But Jacob made the case that prohibiting him from buying a car just because he is visually impaired would be discriminatory.
So he started looking at offroad vehicles that were cheap, easy to get and durable. He bought a Toyota Forerunner that needed a lot of work. Jacob and his grandfather, Jose Chacon, replaced the brakes, turned the rotors, and replaced the transmission fluid.
Jacob, who now has his learner’s permit, knows he has more restrictions than most other kids when it comes to driving, and there are some people who oppose his decision to buy a car.
“I bought one anyway, and now they are OK with it,” Jacob said. “I get more respect because I’m trying to live life more than what they tell you it is going to be. A total symbol of hope in life. Yeah, I love my car.”
Jacob’s family has always been there to support him as he deals with vision loss. His parents take him to eye doctor appointments, adjusting their schedule to meet his needs, and his older brother takes care of him, especially when he needs an extra set of eyes to help him navigate menus with small type and other potential problems.
“In my life, family is probably the second most important thing, in my eyes. First being God, but second being family,” Jacob said. “It’s an unconditional love that cannot be replaced by anything else. Family can bring you up at your lowest times. They are always there. They always have your back. That’s a very important ideal in my life that I would like to keep forever.”
Credits:
Jeff Malet and Thomas-Santiago family