Blind From Albinism, Photographer Uses Camera for Eyes
Born with albinism, Amy Hildebrand overcame blindness to forge thriving career.
March 26, 2012— -- 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.
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.
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