Charlotte was born on May 30, 2004 with Total Anomalous Pulmonary Veinous 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. It is a special way for a machine to help your child, while he or she is very sick as it provide time for the body to rest and recover. Charlotte sustained multiple organ damage and a stroke. Her kidney damage was so severe that she required a transplant before the age of 2. 22 of Charlotte’s first 36 month were in the hospital. 16 of those months she was in critical care.
In October of 2005, Charlotte has her second open heart surgery. Charlotte was learning to eat by mouth, walk in a gait trainer and talk when we realized she had lost her hearing from her early trauma and meds.
In June of 2011, she received a cochlear implant and was making great progress.
In February of 2012, Charlotte was diagnosed with Lymphoma. Her cancer is transplant related and causes rapid 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. Charlotte is now in remission.
It’s hard to even understand what the past 10 years has been like for their family. Charlotte is treated at Columbia / NY Presbyterian which alone can add up to $50 per day in just tolls, parking and fuel. Their family’s credit has been ruined by the medical bills that they have been unable to keep up with. This impacts everything including their ability to purchase everything they need to care for Charlotte.
Steps Together is now welcoming Charlotte into our community.