This is our daughter Sara. She was born in July of 1992. Sara was diagnosed with Juvenile Batten Disease in May 2001, which is a terminal degenerative neurological disease with no treatment and no cure. This devastated our family. As the years since have passed, we have seen how this disease has relentlessly robbed Sara of a future that was once filled with so much promise. We treasure each shy smile and burst of giggles. Though she has lost most of her eyesight, she bravely struggles to do the simple things that used to be so easy, and daily shows us the power of love and how precious life is.
Unfortunately, the world has lacked being lifted up through the telling of stories like Sara's, because too often, their suffering and deaths have been too quiet for others to be able to hear. Sara, and other children like her, will have been heroes, as they cling to life with a spirit that defies destruction, even in the midst of acute suffering and loss. As Sara's parents, we are so very proud that we were the ones chosen to share in her very special life.
We are dedicated to finding a cure for Juvenile Batten Disease. Please join us. Together we can make a difference, and give Sara hope for a future.
Pat and Mike Pfaller
