There’s nothing more we can do for you…
If you’ve experienced severe vision loss you’ve probably heard these words before and their impact can be devastating. Imagine then, the excitement on the birth of your first child and upon delivery, when the doctor places the baby in your arms he tells you that your baby is blind and has a genetic disorder for which there is no cure. This is what happened to Teri Shields the mother of Amy Hildebrand, the young woman I’m featuring in today’s Fierce Fridays.
“…and the doctors told my parents I was blind. My mom was 20, my dad 24, and as if they didn’t receive enough shock when the doctor placed a white haired baby in their arms, he then proceeded to tell them that I had a severe case of Albinism, and that there was nothing they could do to “fix” me.”
After Amy was born, the doctors told her parents that she wouldn’t be able to do a lot of things because of her blindness due to severe albinism. Albinism occurs when one of several genetic defects makes the body unable to produce or distribute melanin, a natural substance that gives color to hair, skin, and iris of the eye.
The National Organization for Albinism and Hypopigmentation (NOAH) states that approximately 1 in 17,000 people in the U.S., has some type of albinism. Vision problems that are not correctable with eyeglasses occur in all people with albinism however the extent of visual impairment differs depending on the type of albinism.
While Amy’s albinism makes her unique, I was struck by her resolve to prove the doctors wrong as detailed in an excellent article by Susan Donaldson James (ABC News). One of the things that impressed me most; aside from the fact that Amy’s a wife, mother of 2, professional photographer, and Best Day Ever business owner is her tenacity.
Back in 2009 Amy challenged herself to a 1,000 day journey where she would shoot a photograph that summarized each day and then post to her blog, With Little Sound. She started her challenge on September 14, 2009 and ended it with the 1,000th photograph on June 12, 2012. I have not seen all of Amy’s photos but I can tell you the ones I did see were awe-inspiring. It takes special fortitude to make a commitment and follow through like Amy did on this challenge.
During an interview in 2012 with Rachel Devine and Peta Mazey of Beyond Snapshots, Amy was asked “What is it about this project that speaks personally about you?” “Thankfully my parents weren’t the type to believe everything they hear, and so they started searching for doctors who had studied the albino eye, in hopes there might be some way I could gain my sight back. Ironically enough there was a young medical student here in Cincinnati that was wanting to research the affects of contacts on infants’ eyes. My parents eagerly signed on the dotted line, and at three months I had my first pair of contacts.”
“A few weeks later I was grasping for shadows and the experiment was deemed a huge success. The med student and I were written up in medical journals across the country. The next twelve years or so I was fitted for all different types of glasses and contacts, but around fifth grade I sort of topped out. I can still remember those early days though, around the age of 2 or 3 studying shadows and light on the kitchen floor of our apartment. I think even then I knew how lucky I was.”
When I read the above excerpt I had goose-bumps and I realized that Amy came by her steadfastness honestly. To put oneself in the place of her parents who fought valiantly on her behalf so that Amy would have the same opportunities in life as her sighted counterparts speaks volumes.
“My photos are sometime straightforward and sometimes more imaginative, but I treat every one with the mindset that I never would have seen these amazing images if it had not been for my parents, that med student and God’s grace.”
After reading the Beyond Snapshots interview and the ABC News article, I was not surprised that Amy would eventually come to love and then become a successful photographer. Amy, you are a remarkable person who is proof that in the paraphrased words of Jesse Jackson “if the mind can conceive it, the heart can believe it, then you can achieve it”!
If you haven’t already done so by clicking on the links provided in this post you can visit Amy and her husband Aaron’s website at Best Day Ever.
“Strength does not come from physical capacity. It comes from an indomitable will.” ~Mahatma Gandhi