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 Nightmares begin without warning. Alexandra lives her nightmare each day, having already undergone three brain surgeries to remove a lesion in her brain stem known as a Cerebral Cavernous Malformation, or CCM. This vascular abnormality could erupt at any moment and make this day her last. Surgery alone will not cure Alexandra; it will only buy precious time until the cure can be found. But the devastation that brain surgery can cause is so severe that another surgery is not an option. Even at Alexandra’s young age, she understands the quality of life.
In April 1998, Alexandra awoke in the middle of the night – feverish, with a runny nose, and complaints of a headache. The emergency room doctors diagnosed her with the flu. The following night she awoke again; this time banging her head against the wall, screaming, “I want to die!” Three days later, following two more misdiagnoses, Alexandra underwent her first brain surgery in an attempt to remove the lesion. Five months later, upon returning from a summer vacation, Alexandra’s malformation showed signs of another severe bleed and, on the day before Thanksgiving, the doctors had no choice but to perform a second surgery.
Although Alexandra faired well and the threat of danger appeared to be gone, she returned from a vacation in July 2001 and suffered what was believed to be a stroke while on the airplane. Alexandra spent nearly a month living with partial left-side paralysis, while her mother, Lee, and doctors weighed the risks of a more complicated third surgery. By August, the bleed in her brain stem compromised her health and Alexandra was hospitalized until her surgery in September.
Alexandra continues to defy all odds. Doctors have repeatedly stated that the malformation in her brain stem would have killed someone else in an instant. Each surgery has chipped away at her life, bringing with it both physical and emotional scars. She suffers from periodic vision problems, she’s unable to hear out of her right ear, and the left side of her body is weak from nerve damage. Alexandra attends school minimally and is unable to do typical activities of a girl her age. Air travel and driving to the mountains aggravate her condition. She is restricted from leaving her home for more than a few hours and, as a result, she leads a very sedentary lifestyle but doesn’t complain. Alexandra is grateful for each day and is full of life knowing there is a cure available within her lifetime. She just wants it now…before it’s too late!
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