My family has been fighting Batten disease for many years. Once upon a time, my sister Taylor earned straight As in school and sang the words to all the songs she heard on the radio. She insisted on joining the Girls on the Run program at her school, even though she’d recently lost her vision. She ran two 5K races with her team.

Today Taylor is totally blind, unable to speak, learn or walk, suffers from seizures, and has a feeding tube. Batten disease stole my sister’s childhood. Now it’s stealing her life. Other lives, too, are being changed by Taylor’s illness – those of her family, friends and all who love and care for her.

This is the human cost of rare disease. continue reading →