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One Small Step

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Dr. Cynthia Paulis: A hurricane was pounding the coast of Bermuda, and even though it wasn't expected to hit the Northeast, the fallout was beginning to take effect on the south shore of Long Island. To escape the blistering August heat, I decided to take a walk on the boardwalk and let the ocean breeze fill my lungs with sea air.
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The ocean was magnificent. Thundering waves, their powerful white crests six rows deep and 15 feet high, crashed on what remained of the beach. Nearby, seagulls mocked the small birds as they retreated from each wave. After watching the avian show, I decided it was time to keep walking. The fragrant primroses that had once decorated the dunes with their delicate pink and white flowers had now been replaced by plump orange seedpods, the hallmark of fall.

In the distance, I saw a man walking backwards with a camera, a woman in front of him and, in between them, a little girl roughly 4 or 5 years old. The man and woman were applauding and cheering the little girl on as she walked the well-worn planks, recording each step she took with the camera. The little girl'sknee-length floral dress swirled and danced with each breeze around her stiff legs.Only something was wrong. The jubilant little girl was tethered to a bright green aluminum frame on wheels by several black belts that looked very much like seat belts.

I watched her clumsily navigate the wood planks. Her face was a sight to behold -- unusually wide green eyes framed by dark, soft brows and a joyous smile that illuminated the boardwalk. As she took each small step (with the encouragement of her parents), she broke into a victorious yet silent smile. Her smile was so contagious it even made me smile and cheer her on.At one point, you could tell she was starting to tire as she let her entire body weight fall forward at a 45-degree angle, only to be rescued by the black seat belts holding her tightly between her legs and around her waist. Yet this momentary setback was followed once again by a radiant smile as she soldiered on, placing one foot clumsily in front of the other.

My curiosity as to the child's medical condition took over. I introduced myself to the parents, explained that I was a physician and inquired about the child's medical problem. "She has Angelman Syndrome," the father responded. I have to admit that I felt stupid. After 29 years as a practicing physician, I had never heard of this disease. The mother explained, "She is missing a chromosome."

Apparently, this disease leaves a child with the inability to talk and walk, yet he or she remains blissfully happy. Another term for this disease (as I learned later that night, via Google) is "Happy Puppet Syndrome," since the child is mute and happy and all forms of movement appear puppetlike. The mother graciously continued to share with me information about her daughter's caregiving, which involved daily spoon-feedings, physical therapy, a sleep-apnea monitor at night (with alarms that go off when she stops breathing) and a heart monitor that checks her regularly. I was taken aback as she systematically and cheerfully explained her daily routine.

The little girl's brother, a blond 8-year-old boy, was glaring at me from the edge of the boardwalk while his concerned grandmother waited patiently as I questioned the parents further about this curious disease. The mother continued, "I told the pediatrician that something was wrong with her when she wasn't walking at age 2 -- only to be told that I should stop comparing her to her brother. I knew something was wrong, but they wouldn't listen to me. We finally took her for genetic testing, and that's when we found out that she has Angelman Syndrome."

I really didn't know what to say at that point. I didn't understand the disease that she was clearly so well-versed in, and I was embarrassed for my profession because my fellow doctors hadn't listened to the mother when she'd instinctively known that something was wrong with her child. "This is the first time she has ever walked," exclaimed the father as he proudly recorded each precarious step his child took.

I looked at the little girl one more time and realized that I was witness to something extraordinary. She looked me straight in the eyes and gave me a big smile. Then, placing one small foot in front of the other, she awkwardly lurched forward, one step at a time, for her victory lap across the boardwalk. The wind picked up, and as the waves crashed against the beach, it almost sounded as if nature were also applauding her.

My eyes welled with tears as I looked to the ocean and watched the plovers run in and out of the waves. With determination and the love of her parents, this little angel was doing the impossible: walking, miraculously, one step at a time.


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