22-Year-Old from Nepal With Rare Heart Disease Awaits Heart Transplant in Kerala

Durga has crossed the Nepal border and reached Kerala's Kochi. She is waiting for a heart transplant surgery for a rare genetic disease called Danon disease. India’s organ transplant law prioritizes its Indian citizens over foreign nationals. 

Kochi: Durga, a 22-year-old from Nepal, waits at her temporary residence in Kochi, dreaming of a life free from pain. She is awaiting a heart transplant for a rare genetic condition called Danon disease. Having lost her parents, she grew up in an orphanage, and tragically, her mother and sister also succumbed to the same illness. Recently, she found hope in the news of successful heart transplants at Lisie Hospital—a young man from Angamaly and a girl from Kollam had undergone the surgeries successfully. Inspired by their stories, Durga clings to hope. Diagnosed at 19, Durga has endured significant health challenges, including difficulty breathing. She initially received treatment in Lucknow before moving to Kathmandu. Her father, mother, and sister had all passed away, leaving her to grow up in a Nepalese orphanage. Danon disease is a fatal condition that affects the heart, muscles, brain, and eyes, and Durga has faced death multiple times—yet she survived.

Legal Roadblock

Brought to Kerala by a Malayali running her orphanage, she sought better medical care. Her brother is by her side during this journey. Durga appreciates Kerala, praising its climate, food, and healthcare facilities. She is currently being treated at Ernakulam General Hospital, which is prepared to perform the heart transplant once a compatible donor becomes available. However, Durga faces significant legal and logistical hurdles. Under the Transplantation of Human Organs and Tissues Act, a foreign national can receive a heart only after patients on the state, regional, and national lists, as well as persons of Indian origin, have been considered. Despite these challenges, Durga continues to wait, holding onto the hope of returning to a peaceful, pain-free life.