Support Us

Emery was born July 30, 2008, with hypoplastic left heart syndrome (HLHS). Her parents received the diagnosis about 23 weeks into their pregnancy. The couple knew Emery would be facing multiple open heart surgeries, and possibly a heart transplant. Emery endured two of three staged open heart surgeries for HLHS, but her right ventricle was not functioning well, and she was assessed for transplant. At 19 months old, Emery was put on the transplant waiting list.

Her family considered themselves lucky to have her at home, and expected to be waiting for several months for a heart. They were shocked to receive a call the next morning after she was listed, stating three was a heart for Emery. The donor heart was not a perfect match, and Emery experienced rejection upon receiving the heart. She was treated in CICU for three weeks, to strip her body of as many antibodies as possible to stop the rejection.

During her three-week battle, Emery was very sick, and the treatment she received was very new. Although she was able to go home after a month, the year following transplant was the hardest—trying to manage her anti-rejection medication, which caused serious side effects and a lot of stress.

Once her anti-rejection meds were tapered back, Emery began to thrive. She had five good years with her heart, surrounded family and friends. Unfortunately, Emery’s condition deteriorated in the summer of 2015, and Emery passed away on September 4, 2015, while waiting for her second transplant heart. Her family is thankful to the donor family, and for the medical advances employed in order to give Emery an extension on her life.