Blind From Albinism, Photographer Uses Camera for Eyes

PHOTO: Amy Hildebrand
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Amy Hildebrand was born blind. Just hours after delivery, her parents were told that she would never ride a bike, attend regular school or watch movies with friends.

"The doctors told them, 'She can't do this, and she can't do that.' They had that sensitive conversation then walked out the door," said Hildebrand, now 27, with a hint of sarcasm. "Here's your baby."

Today, the Cincinnati native has defied all those predictions. She is an accomplished visual artist, running a photography business with her husband, whom she met in a college darkroom.

"I was told I was going to have to go to a blind school and read Braille, but I still can't read Braille," said the feisty photographer, who said she can do "pretty much anything."

Hildebrand has albinism, a rare hereditary disorder that prevents the body from making melanin, the substance that gives color to hair, skin and the iris of the eye.

When the enzyme that is responsible for pigmentation doesn't work properly during fetal development in the womb, it can impair the entire visual system.

In Hildebrand's case, the defect was severe, causing complete blindness, until she had experimental treatment as a teenager that restored some of her sight.

"I am a person with albinism," she said. "But I am also a person who does photographs and a mother and an artist. My albinism is only just one aspect of me. It doesn't define me."

According to the National Organization for Albinism and Hypopigmentation (NOAH), about 1 in 17,000 Americans have the disorder.

Albinism is caused by two recessive genes, one from each parent, and therefore the risk of passing on the disorder in each pregnancy is 1 in 4. But in Hildebrand's family, three of the five biological children were born with albinism.

The family also adopted a sixth child from India, who also has the disorder. "She looks like the rest of us," said Hildebrand, who has pale skin, snowy white hair and violet eyes.

Their mother, Teri Garza Shields, 48, challenges all of her children -- Amy; Austin, 24; Andrew and Benjamin, 22; Luke, 15; and Molly, 9 to stretch beyond their disability.

"Your only handicap is the limit you put on yourself," she tells them. "You can accomplish great things if you put your mind to it."

Only her identical twins do not have albinism.

Amy Hildebrand fell in love with photography in a high school class then went on to study it in college.

"It felt natural to me," said Hildebrand. "I started using the camera as my eye. I could show people exactly what I was seeing."

Hildebrand just posted her 920th photo on her daily blog, With Little Sound, after challenging herself to take 1,000 images in 1,000 days. She began the project in 2009, when she was at home with her children, now 4 and 2.

Amy Hildebrand took this photo as part of a personal challenge to shoot 1,000 photos in 1,000 days.

And with her 29-year-old husband Aaron, she decided to stretch their business image, as well, creating a free-wedding give-away -- "The Happiest Bride on the Block." The contest drew 50 contestants from around the country as she convinced local vendors to donate to a lucky couple.

Hildebrand has trained in Atlanta with some of the nation's most notable wedding photographers who have been featured in the magazine Martha Stewart Weddings.

But getting to this high point in her career has been an uphill battle. The memories of her early days, like her eyesight then, were hazy.

"The world at that time was very fuzzy, but with lots of color," she said. "I could see the shape of the couch, but not the pattern of the fabric."

Despite what earlier doctors had told them, her parents were convinced medical intervention could help their daughter's eyesight.

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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