Sawyer Kate Allred is our 24 year old daughter with a severe and intractable seizure disorder. Sawyer’s seizures began on her 5th birthday and were almost immediately debilitating to this previously healthy girl. Over the years she has had 3 neurosurgeries, taken virtually every common and experimental seizure drug, had a Vagus Nerve Stimulator (VNS) implanted, tried the Ketogenic diet, along with a variety of other therapies. Her seizures are still common, severe and have left her essentially brain injured and intellectually delayed.
Because her seizures are so unpredictable, she is a fall risk and has to be under constant supervision. Family and caregivers must be ever vigilant and know seizure protocol. Our schedule is geared to her needs. Life’s priorities reflect the reality of medications and their side effects, seizures at home and in public, emergency medical treatments, legal commitments and planning, insurance worries, and concerns about long term care.
Since the onset of her seizures, Sawyer has not been able to participate in normal activities, and has become part of the “special needs” community. Her brother never had the sister most of us take for granted. Grandparents, aunts, uncles, cousins and friends have missed out on her fullness. And she will never have the quality of life and it’s richness of experiences that parents wish for all of their children. This is probably our greatest disappointment for her.
Despite her disability, Sawyer has a disarming charm and a winning smile. She knows a person’s character after just moments, her laugh is infectious, and she has a moral and spiritual compass.