Vincent Ortega’s Story


This is Vincent Ortega (aka Monkey) born on January 11, 2011.

My husband and I had struggled for years to start a family and were thrilled when we finally became pregnant and gave birth to a beautiful baby born.It was soon after birth that the doctors noticing a slightly smaller than normal head size, performed a MRI. The MRI showed multiple brain malformations. Although we knew our son would have severe limitations, he was perfect in our eyes. He was such a happy little boy who always smiled.It wasn’t until Vincent was about a year old that we learned that it was worse than expected. A couple weeks after having a cold, he was breathing heavily. We rushed him to the ER where he started having seizures and was put in the critical care unit. Ten days later, we learned that due to his high lactic acid levels that Vincent had a life limiting mitochondrial disease. After the diagnosis, we spent our time enjoying every moment we could with Vincent. We did all would could to keep him well because the common cold could be life threatening and usually involved a hospital stay.

When he turned 2 years old, we had a huge party was we knew each birthday could be his last. About a month after his birthday, Vincent contracted a virus. Within two days of showing signs of illness, he was on lift support. Vincent’s type of mitochondrial disease, Leigh’s disease, is neurodegenerative. From a MRI, we told that this virus was too much for his body and had damaged the critical life-sustaining parts of his brain.

My husband and I miss our son everyday. We feel blessed to have been chosen to be his parents, but hope that others will someday not have to go through what we have been through.