Thursday, April 14, 2005

Lighting the Way

normal vision vs encroaching Macular Degeneration

"Hope sees the invisible, feels the intangible, and achieves the impossible." Helen Keller

"I feel confident that if we continue to support the Foundation Fighting Blindness, our children and grandchildren will be able to enjoy full, independent lives without the fear of going blind." My Mother

Fourteen years ago, on a typical sunny Florida day, my mother was on the golf course lining up a putt. She looked down and saw two golf balls instead of one. Looked up and saw two flags instead of one. She blinked her eyes, the images merged and she continued to play. In the back of her mind though, she knew. Darkness was crouching, ready to pounce.

A week later, sitting at her make-up mirror she closed one eye to apply mascara -- and her face disappeared. Replaced by a dark blur with a halo of light around the edges. Panic set in as she opened and closed each eye, one at a time. Light. Dark. Light. Dark.

Just like that, her world changed forever.

She had inherited her mother's sight-stealing disease. My late grandmother suffered the devastating effects of Age-Related Macular Degeneration (AMD) for years. Now it was my mother's turn. Tests soon confirmed that she too was slowly, inexorably going blind.

But my mother's a fighter. Hope trumped panic as she sprang into action, determined to find the "magic bullet" that would save her sight. For five years my parents traveled to doctors around the country, and then the world. Always the outcome was the same -- nothing could stop the disease that was stealing her sight. There were treatments to slow its progression, but no one knew for how long.

She tried them all. She used every weapon in her considerable arsenal to get herself admitted to research studies and clinical trials. She submitted to laser treatments, surgeries, new and experimental medications. Some worked, some didn't. But even the ones that seemed successful at first, eventually failed.

So finally there she was, facing the ever encroaching darkness with no viable options and no hope. That's when she began a new fight. She found out who was doing the most cutting edge work toward a cure -The Foundation Fighting Blindness (FFB)- and threw her support to them. She started attending meetings, met researchers and staff, began to formulate a plan of action.

She recognized that the large retired population of South Florida represented a strong potential donor base and created the first Palm Beach County Chapter of the Foundation Fighting Blindness. Then she mobilized friends and family to help put together fundraising events. She organized a symposium on Macular Degeneration, attended by more than 600 people affected by the disease.

She's on the FFB national board now and continues to work tirelessly raising money, awareness and, most of all, hope. Because this is a very personal quest ... AMD is hereditary and she wants to make damn sure there's a cure in our lifetimes, if not hers.

My mother can't drive, play golf, read a book or a clock, enjoy a movie or a sunset. Her home is filled with pictures of beloved grandchildren she can no longer see. Yet even in darkness, she continues to believe in the light at the end of the tunnel.

You can find the FFB website here if you want to seek some light for yourself. You might even see her there, offering hope.

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