Jack’s Kids
Charlotte Downey

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Charlotte’s Story…

Char was born with a heart defect called TAPVR, which means that all 4 of her pulmonary veins, which bring oxygenated blood from her lungs to her heart, were not attached. She had emergency open heart surgery when she was 12 hrs old. While recovering from that surgery she had a stroke, or brain hemorrhage, when she was 9 days old due to Heparin she was given to prevent clotting. Also, her kidneys did not receive enough blood flow, eventually requiring a transplant before she turned 2. 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.”

During her 2 bed year she got RSV and was on a vent for 12 weeks, which caused further damage to her lungs. Finally in Feb of 2012 she was diagnosed with PTLD, a lymphoma that transplant patients get when Epstein Barr Virus (which she got from a blood transfusion), becomes lymphoma because the immune system is suppressed so she doesn’t reject her kidney.”

Charlotte’s developed 3 tumors in her brain and she has been receiving 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.