WASILLA — Jacob was only 4 months old when officially confirmed with Optic Nerve Hypoplasia.
The eyesight condition, one of the most common visual impairments in children, is where the optic nerves in the eyes are much smaller than they should be in a normal eye. The smaller nerve causes everything seen to be fuzzy and poor depth perception, not unlike when a person removes their glasses, and involuntary and quick eye movements.
“I try to touch the stuff, maybe like a door handle, the fridge, but then I realize that I’m a little bit too far away...I gotta bring stuff closer to my face, and that’s about it,” Jacob explained his way of coping with his blurred existence.
ONH is part of a group classified as Midline Diseases, which are conditions that are located in the upper respiratory tract and face. Most people with one of the diseases in this location of the body often have others, but Jacob only has one, making him quite rare. The condition does not typically worsen over time. If anything, the vision should improve just slightly.
Jacob’s mother, Vanessa, explains what his vision looks like.
“He doesn’t know any better, so he’s adapted. What we see as being a certain distance away, he doesn’t see the exact same thing. But he’s learned what that means to him so he doesn’t know any different, like we don’t know any different.” Vanessa said.
Early on in school, Jacob received assistance and guidance from vision impairment experts throughout elementary school. He was given various tools that made activities like reading a book easier. But, by middle school, Jacob decided to retire the glasses and the domes so he wouldn’t have to worry about carrying them around and could appear more like the normal student.
Growing up with ONH, Jacob experienced a large number of questions from peers. Every day, Jacob said, he’s asked questions about why he holds items so close to his eyes, or why he moves closer to screens to read them, and most of all why his eyes shake.
Now he isn’t rattled by the questions anymore, but Jacob admits, he used to be.
Jacob described an example from a few years ago when he was in gym class when a girl bluntly asked what was wrong with his eyes.
“This girl was like ‘what is wrong with your eyes?’ and at the time I was super insecure, so I was like ‘what the heck is wrong with you?’” Jacob said.
With age and maturity, Jacob has been able to move pasts his middle school insecurity and answer questions and speculations about his ocular condition with confidence and without annoyance.
“I don’t think they’re intentionally trying to be mean about it,” Jacob said.
So, he patiently answers their concerns and attempts to teach people at the same time about ONH.
With the support of his family and technology, Jacob pursues personal interests inside and outside of school. He’s a current green belt in Taekwondo, takes technology and art classes and MSCS, and is an avid gamer.
One of his favorite classes is Creative Tech at MSCS where he explores topics such as digitally produced music and coding.
Jacob explained that he has been able to pursue his interests with ease, and technology has had much to play in that. He said technology’s ability to zoom in on pages and images, so he doesn’t have to lean in so close to a screen, or try as hard to read it in the first place, is the most significant help for him. He can’t imagine what his life before this type of technology would have been like for others.
ONH hasn’t stopped Jacob from being an athlete either. Jacob thrives in Taekwondo. Over the last two years, Jacob has completed four out of nine belt levels. The sport is not necessarily harder for Jacob because of his vision, but the sport does present a different set of challenges.
“In Taekwondo, there’s this thing called race distance. That is judging how far away your target is that you want to kick, and knowing the extension of your leg to that target. Not having very good depth perception, I have to really work on my race distance all the time,” Jacob said.
To learn more about Optic Nerve Hypoplasia and the effects of the condition, see rarediseases.org/rare-diseases/optic-nerve-hypoplasia/ and
Hannah Reinhardt is a sophomore at Mat Su Central. This is her second year in journalism.