Teresa Villalpando

Hi my name is Liahla Roberts-Valdez. I have six children. My youngest was just diagnosed with Sandhoff disease. She is eleven months old and her name is, Teresa Villalpando.

Teresa is so very beautiful in all her ways. She has the brightest smile I have 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 me so much about life.

When our hard journey began, Teresa was almost 3 months old. Things started going wrong when she got a cold that very 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 get better soon. ‘Get some sleep,’ the doctors would tell me, until the right doctor listened and said, ‘We have to do something now.’

Cat scans, M.R.I.’s, echoes, bronchoscopies and blood work after blood work. Three months later, she can’t hold her head up. ‘Help me please! Please! Something is wrong with my baby!’ All they could say was ‘she’ll be fine’. For 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!

Please!

Please help my baby!’

Slowly the bigger picture started coming together. My baby is sick. There is no treatment. Such a rare disease, the doctors here have never seen it.

Sandhoff disease is a type of metabolic disorder that 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 develop cherry red 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 the disease. Most children with Sandhoff die by the age of 3.

It is my hope that everyone who knows about my daughter dedicates one dollar towards the research of Sandhoff and other lysosomal diseases. By doing this, I will know that I have done everything possible to help Teresa.

We have started the ‘Help Teresa’ campaign with the help of NTSAD. Please consider making a donation in Teresa’s name today. Please visit. Donations may be made online through PayPal or send a check or credit card number (MasterCard, Visa and Amex accepted) to:

NTSAD – Help Teresa
2001 Beacon Street, Suite 204
Boston, MA 02135

To learn more about Teresa please visit www.myspace.com/helpteresa.