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I Was Born Blind: Julia’s Story

Lee este articuloJulia, 8, was born blind, but her story is bigger and brighter than that.

Here’s a clue: She now says that coloring is one of her favorite activities. She likes coloring on a white board. She likes coloring on her shoes. “But that makes mom mad,” she says.

Julia was born with very big problems with her eyes. They didn’t form as they should have before she was born. There are lots of reasons why someone might be blind or have poor eyesight. It could be a problem in the eye, which has lots of different parts. (That was Julia’s trouble.) Or it could be a problem with the way the messages get from the eye to the brain, which tells you what you’re seeing. Is it an apple or an alligator?

Her parents took her to see many doctors to learn what was wrong and to see what they could do to fix the problem. Her first surgery was when she was 10 days old. Other surgeries followed, but it was a long while before anything changed for Julia. She was a baby and then a toddler, growing up blind.

Because she couldn’t see, it was taking longer for Julia to do the stuff most babies and toddlers do — like crawl around and learn to stand up. And her parents couldn’t teach her in the same ways that other babies learn — like showing her a book and saying “book.” Everything was harder for Julia.

At First, Nothing Helped

By the time she was 15 months old, her parents were worried and sad because surgeries, medicines, and treatments didn’t seem to be fixing Julia’s vision. The problem turned out to be her corneas. Your cornea is thin and clear. It covers the front of your eye and you need it to see because it focuses the light as it enters the eye.

What Julia needed were new corneas. One day, Julia’s mom was on her computer reading about space travel. She turned to Julia’s dad and said, “It is so dumb we can put a probe on Mars and they don’t make an artificial cornea.” Then she searched the Internet for “artificial corneas.” Smart mom!

The search turned up the name of a doctor in Australia. Julia’s parents contacted the doctor, who gave her more information about a kind of artificial cornea that was just starting to be used.

They learned they could go to a hospital in Maryland called Johns Hopkins, where Julia could have surgery to place artificial corneas in her eyes. She was only the 7th child in the world to have this transplant surgery. The surgery was a success, but it only gave her limited sight. Still, it was a huge improvement for Julia to be able to see the world around her, even if she couldn’t see everything perfectly.

New Corneas = Happier Baby

Before the transplants, her parents worked for hours each day to get little Julia to roll over, sit up, and stand. She accomplished these important skills, but she didn’t like it. Like many children who can’t see well, Julia hated to be moved. Imagine if you couldn’t see anything around you and suddenly someone picked you up and you could feel yourself moving. But after the surgery, life got so much better for Julia.

A few days after her transplant, 1-year-old Julia walked the length of the living room couch holding on. Her parents were amazed! With improved sight, Julia began to explore her world and got stronger.

She had a transplant in the other eye when she was almost 2. After that surgery, she began walking on her own without holding on to anyone or anything. Today, she loves to run and uses a cane to feel her way (check out her video). She also likes jumping on the trampoline and is a really good swimmer! “I do not think this would have been possible without her vision,” her mom says.

Julia Takes Off!

Her body seemed to come alive after getting better vision, and so did her mind. Before the surgeries, she could only say about 20 words. Even with speech therapy twice a week, she did not improve much. But after the first surgery, she could see well enough that she started reaching for objects — a normal thing that babies do but that she had never done before. She reached for a cup and her mother said, “Good girl, you got the cup!”

Julia’s vocabulary kept getting better and by age 3, she knew lots and lots of words. Recently she won an award at school for reading more than 400 books. You might wonder how someone who can’t see well reads books. Julia can read very large type on a page but if she only read that way, it would be slow and a little boring. To read more quickly, Julia reads books in Braille. Braille books are written in a kind of code. Bumps on the page mean letters and words.

It took Julia a while to learn what all the bumps mean, but now she’s good at it and likes to read this way. “I like Braille because I can read in the dark and I can read faster than the kids in my class. I got two trophies for my reading,” Julia says.

Julia is not just a reader. She’s a writer. She and her mom wrote a book about what it’s like to have trouble with seeing. Seymour is a snake whose vision is so blurry that he tries to make friends with a garden hose — oops! But by the end, he finds a solution to his poor vision. And he finds a new friend in a white mouse, who asks him, “Are you a vegetarian snake?”

Sharing the “Seymour the Snake” book is one way for Julia to talk about being blind.

“I have lots of friends in my class and they know all about my corneas. I told them about my surgeries so they would not be scared if they had a surgery,” Julia says. “I used to hate talking about my eyes, but now I am brave.”

Reviewed by: Mary L. Gavin, MD
Date reviewed: April 2013