From Candela’s Grandmother

My name is Silvia Fernández. I am a grandmother of three beautiful children, a healthy 5-year-old girl, a healthy 2-year-old boy and a beautiful 11-month-old baby who was apparently healthy up to three months. Here, I tell you the story of Candela. Candela was born on May 2, 2017 at 4:30 p.m. in Tacuarembo, Uruguay by c-section.  Everything seemed normal.  She was a healthy child, but eventually regression and symptoms appeared.  The first symptom was after an electroencephalogram that revealed a loss of hearing. Everything else seemed normal otherwise, but the regression continued for Cande.   She experienced hypotonia, nystagmus and other symptoms.  At that point, a blood test for beta-galactosidase was given and the doctors gave us the sad news that Cande has GM1 Gangliosidosis Type 1. They told us that it is a rare disease for which there is no cure or treatment.