Life interrupted by Tay-Sachs disease; Santiago

Jessica Bullock

Santiago del Aguila, four, was diagnosed with Tay-Sachs, a terminal illness of the nervous system. Most children develop Tay-Sachs around three to six months of age. Side effects of this disease include loss of hearing and vision, decreased muscle strength, repeated seizures, inability to digest solids and abnormally slow physical growth. Although he is four years old his physical size can be compared to an average two-year-old.

Santiago, a hospice patient, is surrounding by several volunteers, in-home nurses and a chaplain. He is primarily cared for by his large, supportive family including his Mother, Father, Grandmother and older brother, Flaco. They live together in Sun Valley with their two dogs and several birds.

Most children with Tay-Sachs do not live past their fifth birthday. His condition has taken an expected yet harsh turn for the worst. He was put on supportive oxygen earlier his week. His family expects him to pass on by the end of the month.