UPDATE: Medicaid reversed its decision to pay for the procedure that could save Sophia’s life.

Chasity McVay tries to record the littlest details of her daughter’s life. “I try to document funny little things,” she said, “so I don’t forget.” That’s because McVay isn’t sure how much time her child has left.

It took a bit of miracle to bring her children into the world. “We prayed for five years for a kid,” McVay said.”We had two miscarriages to begin with.”

She finally gave birth to a boy. Sophia arrived the following year. “And we were like, our family is complete,” the mother said proudly. Now McVay says she’s praying for another miracle to keep her daughter alive.

A fever sent Sophia to the hospital when she was six days old. Doctors discovered a virus had damaged her liver. They also diagnosed the baby with hemophagocytic lymphohistiocytosis (HLH), a rare condition causing her immune system to turn on her.

“We’re to the point where they’re saying she needs a liver transplant or she’ll die,” said McVay.

The family turned to hospitals across the country. Only one, MedStar Georgetown University Hospital in Washington D.C. agreed to do the operation, despite the rare condition continuing to affect her immune system. The news from Georgetown offered a spark of hope — but was quickly extinguished when Medicaid in Texas refused to cover the procedure.

Now money, the McKay family says, is the only thing standing between her daughter and a chance at life. The kidney transplant alone would cost an estimated $200,000. The transport and extended care of her daughter could cost even more.

“She’s a person,” McKay said of her daughter. “She has an attitude and a personality. She smiles when mom comes in. She loves when dad sings to her. You’re denying another human being life. Why? Why would you do that?”