Blind From Albinism, Photographer Uses Camera for Eyes


Youngest to Ever Get Wear Contact Lenses

At 5 months old, Hildebrand was one of the youngest ever to receive contact lenses, which were painted with an artificial pupil to help her eyes with light sensitivity.

By 8 months old, she was grasping shadows.

"I started reaching for my Dad's face and everyone thought this was a huge success," said Hildebrand. "There was crying and I was written up in the medical journals."

Gradually, her sight improved, and she was able to read with the help of a classroom aide and teachers who used dark lettering on the white board so she could see the contrast.

She couldn't catch a ball, but she could play soccer.

"Obviously the black and white ball was high contrast against the grass when I was looking down," said Hildebrand. "Looking up for lacrosse or baseball is harder for me. My eyes are so sensitive to the sun."

But keeping contact lenses on a child's eyes was difficult, and by the time she was 12, her doctors had "maxed out" on what they could do for Hildebrand.

The turning point came when Hildebrand was a teenager. "I really wanted to drive and my parents started researching to see if I could do it."

In 1999, the family found Dr. Richard Hertle, now professor of ophthalmology at Northeast Ohio Medical Universities and director of The Vision Center, Children's Hospital Medical Center of Akron.

In 2003, he operated on her eyes. She was one of the first patients with albinism to undergo eye muscle surgery to improve the faulty ocular motor system.

"Albinism is a diverse and complex disease," said Hertle. "If you look at 10 blond, blue-eyed people, not all are diagnosed with albinism."

Those with albinism have a profound genetic defect.

"The entire system is abnormal," he said. "Not just the iris, retina or optic nerve, but also affected are higher visual pathways and their connections in the brain ... the albino visual system affects both, their visual perception of the world and how their eye movements are controlled."

One of the major manifestations of albinism is nystagmus, or an involuntary oscillation of the eyes.

Hertle and colleagues have found that by cutting the eye muscles (as part of routine surgery on the extraocular muscles) interruption of newly discovered nerves results in a change of a poorly understood eye-brain feedback loop, which essentially "reboots" the brain's control over a part of the ocular motor system.

This results in a significant improvement in the ocular oscillations.

This surgery, now done regularly on patients with nystagmus, can improve many visual functions, including visual acuity by 75 percent, according to Hertle.

For Hildebrand, the results were dramatic, though her doctor was not surprised.

"I remember she wasn't going to need surgery to make herself successful," Hertle said. "My impression was she was a wonderful, vivacious, engaging young girl and that she would be fine."

Today, Hildebrand does a wide range of commercial photography from babies to seniors and lots of weddings.

Hildebrand has every day "tricks" that uses to get around her disability. "When I am ordering at a fast food place, the menu is far away -- I see the words, but there's no way I can read it. So I try to think, 'What's served here' and 'How much does it cost the last time I was here.'"

Those skills have served her well in photography.

"I notice so much more," said Hildebrand. "You'd be amazed how much you can remember -- what people are wearing and where someone set a cup down. I have to remember those things to acclimate myself to regular society."

Her mother said she raised all of her children to have the same can-do spirit as Hildebrand and advises other parents of children with albinism to do the same.

"My biggest advice is to enjoy them and to stop worrying," said Shields. "They are going to turn out fine."

"Twenty-seven years ago, it was really difficult," she said. "I had so much fear. I could never have dreamed where she is now."

Her albinism seems to enhance Hildebrand's photography, according to her mother.

"As sighted people we have so much information we are processing because our eyesight is seeing so much," said Shields.

"It complicates it. But in Amy's view of the world, she's so used to seeing things in intimate spaces, that she's learned to appreciate what's in front of her."

To learn more about Amy Hildebrand's work go to her blog, With Little Sound.

To find out more about her bridal contest, go to The Happiest Bride on the Block.

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