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“Elizabeth...Forever Sweet Sixteen”

I awoke feeling so proud on Elizabeth's 16th birthday. Despite being born severely disabled from CMV, a virus I caught when I was pregnant with her, she had made it to her Sweet 16—surviving many life-threatening battles along the way.

Although Elizabeth's cerebral palsy was so severe that she could not walk, talk or even feed herself, she was such a happy young lady—one with a ready smile and a love of adventure, going anywhere her wheelchair could take her.

ElizabethShe especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. At 16, weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes, and soul-capturing smile.

At the age of eight, when it appeared she had finally outgrown her tendency toward ear infections and pneumonia, she began to face a new tormentor—epilepsy. As she aged, the seizures came closer together. They never lasted more than a few minutes—yet once they began, Elizabeth would have one after another. With each one she'd turn a little bluer. We tried many drugs and a special high-fat diet, but all of the treatments interfered with the only skills Elizabeth had—breathing, eating, and smiling. When we tried drugs with fewer side effects, their effectiveness was only temporary. My husband Jim and I were growing more afraid for her.

Less than two months after Elizabeth's sixteenth birthday, I dropped her off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today." Elizabeth smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" Later that day, I got the call I had always feared. "Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."

My husband Jim and I met her ambulance at the hospital. They did everything they could, but Elizabeth was gone. Jim and I took turns holding and rocking her for hours. My husband looked down into her open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth did.

It has been four years since we lost our little girl. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her—never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she suffer hours of discomfort before and after a seizure. She is finally free—and forever "Sweet Sixteen."

CURE epilepsy

Lisa Saunders, Elizabeth’s mother

 

 

CURE CURE is a non-profit organization founded by mothers of children with epilepsy who joined forces to spearhead the search for a cure.

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