In Memory of
Charlotte Spencer Downey
2004 – 2019

June 9th, 2019…
No more IV’s
No more X-Rays
No more drives to the city
No more retching
No more Med lists
No more Catheters
No more Ports
No more Diagnosis
No more Dialysis
No more Blood Draws
No more ER all-nighters
No more Watching from the side-lines
No more Oxygen
No more Feeding Tube
No more Coclear implants
No more Therapy appts
Charlotte is free to soar, run, twirl and dance with all the joy in her heart. We will feel her laughter in every breeze and see her light in every sunset. Thank you Sweet Girl, for choosing us.

  

Charlotte’s Story…

Charlotte was born on May 30, 2004 with Total Anomalous Pulmonary Veinous Return (TAPVR). This required an 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 of 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 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 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.