Hey Clearly Seeing Blind readers! There is a new segment coming to the blog. I am going to interview kids from the Curing Retinal Blandness Foundation about their experiences with their eye disease. starting with Jacob Billingsley. I’ll be learning their stories and sharing them with all of you!
For this first interview, I was able to meet virtually with Jacob Billingsley (and his mom Lissa) to learn all about his story.
Fast Facts About Jacob’s Vision
- He has trouble distinguishing between the colors red, orange, and pink
- He sees better out of his left eye (and barely used his right)
- He sees better out of the sides of his eyes
- His vision acuity is 160/20
- He may get tripped up by a curb here or there, but he will keep on walking
The Beginning
Jacob’s journey started at two years old when he was diagnosed with LCA-CRB1. However, like most CRB1patients, the path to said diagnosis was a journey in itself.
Jacob began experiencing symptoms around nine months of age that were noticed by his parents. They went through many obstacles before finally discovering his true diagnosis. This included following all possible leads to the root of the problem, one of which had been a potential brain tumor. Even once other causes had been ruled out, it still took six months of testing and waiting to get his formal diagnosis: a rare gene mutation that results in a progressive eye disease with no cure.
Since the diagnosis, Jacob has attended yearly doctor visits to monitor his eye disease. He also wears glasses to optimize his visual abilities, though he has admitted he would prefer contacts (only if his room is clean, of course). Additionally, somewhere along the way in those early years Jacob’s family stumbled upon the foundation. While the glasses help Jacob to see, the foundation provides an emotional support system for him and his family that they, and the rest of the families involved, greatly appreciate.
Middle School
Jacob ic currently thirteen years of and is completing his first year in middle school. However, before he was a big, bad middle schooler, he lived in the safe and comfortable world of elementary school.
Leaving Elementary
Jacob faced some struggles in his early years of education. Because of this, he used some accommodations in class. These included a Macbook to do all his work on and extended time on teats. However, as the years passed, he no longer needed extra time on tests because, as his mom said, he became “Such a wiz on the MacBook.”
His mom also said that they lucked out by living in such a great school district. The teachers were all well aware of Jacob’s situation and followed his IEP exactly. Jacob wasn’t really thrilled about this. He would get aggravated at his teachers for trying to tell him what his IEP said he needed when he didn’t actually need it.
The Transition
Jacob faced very different challenges when he entered seventh grade this year. None of the teachers were familiar with his situation and he was essentially starting from square one in his new school. Because of this, he has had a bit of a stressful year, but he appears to have dealt with the punches as they’ve been thrown.
His MacBook is now his only accommodation is school and otherwise he blends right in with all his classmates. Rarely does he need extra help in school, but when he does, he is not afraid to speak up. Overall, Jacob is an independent student who doesn’t let his low vision get in his way.
Adaptions
From two years old to thirteen, Jacob has had a long time to adapt to the world around him that wasn’t built for those of us with low vision.
Adapting to the World
Jacob has become very resourceful in his day to day life. He uses his phone quite a lot to help him see the world. The camera lets him enlarge things that are too small and the flashlights brings lights when his surroundings are too dark. He also seems to have great friends who help him out in crowded public places. And we already covered his amazing MacBook skills at school. Jacob has definitely figured out how to adapt to this crazy world.
Adapting Himself
Having low vision has had an effect on Jacob’s personality. He said that he had noticed that he is more outgoing due to his need to speak up when he can’t see. The truth is, most people are effected personally by their low vision since it is such a big part of their lives. I think Jacob’s mom put it best when she said, “You have other skills that none of us would ever have.”
Thank you to Jacob (and his mom) for participating in this interview!
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