Alexandra's Journey

Alexandra Mae Edges was born with Heterotaxy Syndrome and Complex Congenital Heart Defects that have caused her to undergo 5 open heart surgeries and 11 cardiac catheterizations, as well as an abdominal surgery. After Alexandra's 2nd and 3rd open heart surgery, she developed pulmonary AVM's or arteriovenous malformations, that have severely affected her oxygen saturations, and as she has grown has put undue stress and work on her half a heart. She also has a rare liver abnormality that has caused her to undergo a liver transplant evaluation. Unfortunately because of the state of her heart, she was not deemed a candidate to receive a liver transplant, and has been twice denied. She also has gone through two combined heart/liver transplant evaluations and denied for both those as well. Alexandra also has severe scoilosis that has rapidly progressed to a 70° curve. She must travel to Boston Children's Hospital 3 times over the next 6 months to get her ready for this major spinal fusion surgery. Her team is concerned for her heart function and we must ensure she has the best care to ensure her continued survival and Boston is the only place able to do this for her. Thank you for helping us to continue to get Alexandra the medical care she needs!