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Lilly Kate Cook’s mother says she’s a miracle. It’s hard to argue with that assessment.

“Lilly Kate is 5 years old now,” Katie Cook said. “We found out when I was 38 weeks pregnant about this heart condition.”

The condition, a congenital heart defect called Ebstein’s Anomaly, affected the tricuspid valve of her heart. Cook and her husband, Robert, faced the uncertainty of knowing what would happen when their daughter was born. Now, Lilly Kate is the Upstate Heart Ball’s 2018 Little Heart Honoree. The Cooks are working to raise awareness about the funding needed for research and education provided by the American Heart Association.

“I was induced at 39 weeks,” Cook said. “We had a slew of 14 or 15 people in the delivery room. She was born totally blue, totally limp. She didn’t breathe for roughly the first two minutes.”

Lilly Kate was taken away quickly and her parents were given a diagnosis about 2½ hours later.

“They thought she would have to be helicoptered to MUSC for surgery,” Katie Cook said. “She was able to stabilize a little bit. After nine days in the NICU, she was discharged.”

Lilly Kate’s heart was monitored weekly, then monthly, then every six months, as she grew.

“She was doing great until she was about 3½,” Cook said. “If you didn’t know, you would have no idea that anything was wrong with her.”

After her regular testing, it was determined that Lilly Kate’s conditioned had worsened to the point that surgery would be required. Cook said it was also about that time that they began to notice that she was more fatigued that usual. Her surgery took place in the spring of 2016 at MUSC.

“She was in surgery for 5½ – 6 hours,” Cook said. “They were able to do a repair on her tricuspid valve instead of a replacement. She spent about 8 weeks basically on the couch. She’s been doing great ever since.”

Lilly Kate will face surgery again in the future, but the Cooks are hoping that will be several years from now.

“They basically told us that if she had been born 20 years ago, she probably would not have survived,” Cook said. “It’s such a God thing. She is truly a miracle. Until something like this personally happens to you, you don’t appreciate what organizations like this can do. The money raised for awareness and research truly saved our child’s life. We’re passionate about wanting to help and pay it forward.”

The 2018 Upstate Heart Ball is Feb. 17 at the TD Convention Center. To register, donate or volunteer, visit upstateheartball.heart.org or call 864-605-7139.

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