Like any expecting mother, Sheena Coke was excited to see her newly born for the first time on December 18, 2008 in Pueblo, Colorado. Unfortunately, her newly born son, Nickolas Coke, was not like other babies. He was born only with a brain stem, a serious birth defect known as anencephaly. According to Centers for Disease Control and Prevention (CDC), babies born with this condition are without parts of their brain and skull; each year, it is estimated that 1 in every 4,859 babies in the United States are born with this condition.

Nickolas lived a miraculous life; he was celebrated as a medical miracle though doctors only expected him to live up to a few hours like most babies born with anencephaly. Defying the odds, Nickolas lived a full 3 years and 11 months. Sheena told KOAA-TV in July, “I think the love and caring that everyone gives him is making him stronger and making him live longer.”

According to Sherri Kohut, Nickolas’ grandmother, Nickolas caught a virus which caused his breathing to become labored and eventually stop. She said that CPR was performed on him three times, but Nickolas was gone after the last try. He was laid to rest last Wednesday.

Nickolas did not rely on special medical equipments but had to consume numerous types of medicine. Kohut said, “He was never hooked up to any machines, no tubes, no nothing. He taught us everything, he taught the love, how to be family. He taught us everything.” The Coke family spent the last three years focusing on cherishing and celebrating each day of Nickolas’ life.

Anencephaly is one of the most fatal forms of neural tube defects (NTD). Referring to Duke Center for Human Genetics, NTD is an opening in the spinal cord or brain that can arise in the first few days of human development; thus, it can only be detected within the first month of pregnancy. A prevention technique could be the consumption of multivitamins along with 400 micrograms of folic acid on a daily basis at least 4 weeks before a planned pregnancy.

The life of Nickolas Coke will forever be a medical mystery. He will always be remembered as the little boy who fought to live. Recently, he became an elder brother to Jace Nickolas James. Nickolas was well loved and taken care of. His grandmother referred to him as a hero; she said, “He was our hero because he showed the strength; if I can do this anything can be done.”

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