Family of 5-Year-Old With Rare Genetic Syndrome Raises Funds for Urgent Heart Surgery in US

Ari Yosef, a five-year-old boy from Petish near Ofakim, suffers from Marfan syndrome, a rare genetic disorder affecting his heart and eyes. His mother, Shir'el Eliassam, describes their urgent campaign to raise funds for a complex open-heart surgery in the United States, aiming to save his deteriorating heart function. Ari has already undergone two eye surgeries due to lens dislocation and severe vision problems caused by the syndrome, which also affects his skeletal system and cardiovascular health.

Since birth, Ari showed unusual physical traits such as long fingers and a rapid heartbeat, which initially were dismissed by others as normal body structure. However, after noticing his frequent collisions with objects, his mother sought medical advice. A pediatrician quickly suspected Marfan syndrome, confirmed by Professor Aviva Levits, head of pediatric cardiology at Soroka Medical Center. The disease causes connective tissue weakness, leading to progressive deterioration of organs, particularly the heart and eyes.

Ari is the third of four children in his family. His heart condition has worsened, with his left ventricle nearly nonfunctional and weakening of the right ventricle and aorta. The family is racing against time to secure the surgery that could restore his heart function and allow him to live a normal childhood. Shir'el expresses her hope that after surgery, Ari can play freely without constant restrictions.

As of Monday, over 7,000 donors have contributed more than 1.5 million shekels to support Ari's treatment. The family continues to seek assistance to cover the costs of the urgent operation abroad.