Ahsya: Left Ventricular Noncompaction Cardiomyopathy

"I never thought I would be capable of caring for a child with medical needs, but we are OK. When this little girl who might have died says, ‘I love you mommy,’ you realize how much she has touched so many lives."

– Toni, Mother

Ahsya, a cardiac patient

Ahsya came into Toni and Brad’s life as a foster child when she was 1 day old, joining the couple’s three teenage boys. It soon became apparent that Ahsya had a serious heart problem, and they worried she might not live. She suffered from left ventricular noncompaction cardiomyopathy, a rare genetic disorder in which the wall of the heart’s left ventricle doesn’t quite develop, leaving it with a spongy appearance and diminished pumping ability.

She spent many days in Nemours Cardiac Center, but when her condition could no longer be managed with medications, she became a transplant candidate. Toni and Brad realized how much Ahsya needed them, and began the process of adoption. The adoption came through five days before her transplant.

“We spent five months in the Cardiac Center. The nurses took such good care of Ahsya and our whole family that I knew she was in good hands if I had to leave. Now she is entering the wonderful ‘terrible twos’ and we realize what a miracle she is. She makes us laugh every day,” Toni says.