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Hi my name is Liahla Roberts- Valdez Im with the Sandhoff support for the NTSAD. I have 6 children. My youngest Teresa Villalpando was diagnosed with Sandhoff Disease when she was 10 months; she was 20 months when she passed away.Teresa is so very beautiful in all her ways. She has the brightest smile anyone has ever seen. She is always happy and content and oh so forgiving. The doctors often refer to her as “such a brave little girl." She has taught us so much about life.When our hard journey began, Teresa was almost 3 months old Things started going wrong when she get a cold which quickly turned into these choking spells. We had never seen this before - my baby turning blue, then purple. “Quick, watch the kids! Lets go to the hospital.” Weeks with no sleep soon turned into months, hospital after hospital telling me it was just a cold and that she would be better soon. “Get some sleep,” doctors would tell me, until the right doctor listened and said “we have to do something now.” Cat scans, M.R.I.'s, echoes, bronchoscopes and blood work after blood work. Three months later, she can’t hold her head up. “Help me please! Something is wrong with my baby!” All they could say was "she’ll be fine." Four months later, “No no ! She can’t sit anymore. “Help my baby! Something is wrong. She can’t see! Help her please, she is scared!” Slowly the bigger picture started coming together. My baby was sick, there is no treatment. Such a rare disease, most doctors have never seen it. Sandhoff disease causes progressive deterioration of nerve cells in the central nervous system, because this affects the brain and spinal cord, development slows and muscles weaken. Infants lose the ability to crawl, sit and roll over. They also develop cherry spots in the retina, eventually leading to blindness. Mental retardation and seizures are also to be expected, as well as paralysis. There is no treatment at this time for this disease. Most children with Sandhoff die by the age of 3. We started a campaign “Help Teresa” with the help of the NTSAD organization. We are raising awareness of Lysosomal diseases such as Sandhoff. By doing this it is our hope that more research leads to a cure in the near future.About the family Liahla, mom, is 27 and has the heart of steel. She is very strong and very motivated. She has taken this situation and is changing the world around her. Teresa has 5 brothers and sisters. Adrian is 9 years old and has taken over the role of the gentlemen, he helps mom do things like start the dryer, clean noses, pour juice among the many others. Vanessa is 6 and Promise is 5, they’re the little ladies of the house, girly as can be with dresses and the hair ties. Jesus, 3 and Aries, 2 are the babies along with Tere, for the most they stay entertained playing toys and watching movies.