Like many families whose children are born with serious illness, the Early family vividly remembers the day their lives changed forever.
Dani-Lynn Early was born May 5, 2015. With big, blue eyes and a wide smile to match, she was immediately loved by her sisters, parents and friends. Only eight days later, however, those loved ones watched as baby Dani-Lynn was wheeled into surgery.
Dani-Lynn was born with congenital heart disease. She has three heart defects: hypoplastic left heart syndrome, a birth defect that affects normal blood flow through the heart; ventricular septal defect, a hole in the wall separating the two lower chambers of the heart; and partial anomalous pulmonary venous return, a condition where one or two of the heart’s veins return blood to the right atrium instead of the left.
After her initial surgery at 8 days old, Dani-Lynn spent five weeks in the hospital. After several difficult months and increasingly dangerous congestion, the Earlys brought their daughter to UF Health Shands Children’s Hospital.
“I took her into the E.R. and told them at check-in, ‘I have a heart baby, we are from Jacksonville, and she has been heavily congested for four months and her oxygen levels are low,’” Amelia said. “That was the day I was told by many medical staff, ‘Your daughter is a miracle and we can’t explain why she’s alive!’”
Dani-Lynn had already outgrown her first surgery by the time she was seven months old. Since her diagnosis, Dani-Lynn has undergone two open-heart surgeries and had many long stays in the hospital.
Now at age 3, Dani-Lynn continues her fight to thrive. She is on the heart transplant list as a level 2, which means she is stable and able to continue care at home. When she does come to UF Health, her care is managed by many across the pediatric cardiology team. She sees four therapists each week. From the congenital heart center staff to the Child Life volunteers who engage with Dani-Lynn and her sisters, each person has made a significant and lasting connection with the Earlys.
“The children’s hospital means so much to us,” Amelia said. “Child Life goes out of their way to make sure our other two daughters have toys and books while they are visiting their sister. Guest services checks in on us to make sure we have accommodations to stay local. And because of donations to CMN Hospitals, more research has gone into helping congenital heart disease children live a longer life.”
For now, Dani-Lynn’s life keeps busy between family and other activities. She is the Pure International Pageants “International Inspirational Princess” and looks forward to competing in more pageants and more playtime with her sisters.
“My daughters are playing with their baby sister. My heart warrior has a good fighting chance at living a long life!”
Interested in learning more about our CMN Ambassador Program? Visit giving.UFHealth.org/ambassadors.
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