Charlotte’s Story…

Charlotte was born on May 30, 2004, with Total Anomalous Pulmonary Venous Return (TAPVR). This required emergency transport to NY for open-heart surgery at 12 hours old. After surgery, she was placed on Extracorporeal Membrane Oxygenation (ECMO), a procedure that uses a machine to take over the work of the lungs and the heart. Charlotte sustained multiple organ damage and a stroke. The brain bleed required a shunt to be put in, and her extended time on a vent at such a young age stretched the sphincter between her esophagus and her stomach, which resulted in a feeding tube to help with reflux. Her kidney damage was so severe due to not receiving enough blood flow that she required a transplant before the age of 2.

Twenty-two of Charlotte’s first Thirty-Six months were in the hospital. 16 of those months she was in critical care.

In October 2005, Charlotte had her second open-heart surgery. Charlotte was learning to eat by mouth, walk in a gait trainer, and talk when they realized she had lost her hearing from her early trauma and meds. In June 2011, she received a cochlear implant and was making great progress.

In February 2012, Charlotte was diagnosed with Lymphoma. Her cancer is transplant-related and causes rapidly growing malignant tumors. Charlotte had 3 tumors in her brain. The largest tumor was surgically removed, and the others responded well to several rounds of chemotherapy and then immune cells to help her fight the EBV, which always stays in your body. A healthy person can fight it without issue.

Charlotte is now in remission.