Paola is a beautiful child born on June 29, 2013. She was born after a pregnancy without complications at 10:45 am on a Saturday morning. She weighed 8.15 pounds and a length 20.4 inches. A beautiful very healthy baby girl. At 6 months of age we had to rush to the hospital for a bad case of bronchitis. After being monitored with oxygen Paola was able to go home. The doctor note said that Paola could not do do what she should be able to do at her age. From there, we began many visits until March when we received the sad diagnosis. We were told that our daughter was suffering from a rare genetic metabolic disorder. She had GM-1 Gangliosidosis. We did not know what that meant or what the future would hold. From that day our lives changed. We know had to live for Paola and be strong and keep going for her. Today after almost a year from the diagnosis we still ache for our baby girl. We try to make the most of each day and make life beautiful for Paola. We want to enjoy each day we have with her. She has been so strong and overcome so many things.
We hope to raise awareness for this rare disease which unfortunately for now has no cure. There are kids around the world that suffer from gangliosidosis but hopefully one day we will have a cure.