For Evan and Olivia Rodriguez, the birth of their daughter Layla Sky Rodriguez in December should be a time of joy and love.

Instead, the first-time parents are facing unimaginable tragedy: 15 weeks into their pregnancy, the Rodriguezes discovered that Layla has a birth defect called anencephaly. As a result, she is missing a portion of her brain, scalp, and skull. Most babies born with anencephaly do not survive long after birth.

The diagnosis was an “eye opener” for the National Football League fullback, who is currently a free agent, and his wife. Neither had heard of the disease prior to their daughter’s diagnosis.

“With that being said, medically her chances of her survival are almost nonexistent,” Evan Rodriguez told the Daily Signal. “It was hard on us, hearing that our child won’t live. It was like a heavy weight [was dropped] on our chest.”

At first in shock, the couple ultimately found comfort in one another, and selected “Sky” as their daughter’s middle name–a “perfect fit” for a little girl they say is heading straight to Heaven.

“It’s definitely felt like a roller coaster ride emotionally,” he continued. “We both have gotten better with the support of family, friends, and parents who have been through it or currently going through it now, and of course our faith in trusting the man upstairs.”

Along with the diagnosis, the couple’s doctor gave them the option of terminating their pregnancy. After seeking out a second opinion, they made the decision to carry Layla Sky to term.

“After much prayer I saw clearly, and I knew it was the will of God to carry [Layla Sky] to term,” Evan said. Olivia felt the same way.

Evan and Olivia are now focusing on spreading awareness of the neural tubal defect plaguing their daughter, hoping that dispersing information about the disorder (for example, folic acid intake before conception can decrease chances of anencephaly by up to 70 percent, Evan said) might spare another family this tragedy.

They are also in the process of raising money for anencephaly research at Duke University and will take part in a research study being conducted there.

This past weekend the couple was able to connect with other parents raising money for the study. Evan says it is important for parents in this position to know they are not alone.

“You have to fight for your baby,” Evan said, adding that “life is compatible with love no matter the length of time.”

The Rodriguezes continue to pray for Layla’s survival.

“We ask God to show the world a miracle and the power he has,” Evan said. “We want the best for our daughter and however long she is here we are going to cherish those moments.”