Israeli Boy With Rare Syndrome Finds Voice and Joy Surfing With Oxygen Tank

Itamar Hassin, an eight-year-old Israeli boy born with the rare Cornelia de Lange Syndrome, has made remarkable progress in communication and joy through surfing despite his severe medical challenges. Diagnosed at three months after his mother, Ziv Hassin, insisted on further investigation, Itamar has struggled with significant developmental delays, including limited speech and respiratory issues requiring constant oxygen support.

Living near Sheba Medical Center in Tel Aviv due to his fragile health, Itamar’s family has faced numerous hardships, including his inability to fly and the need for constant medical care. However, two years ago, they discovered the nonprofit organization "House on the Sea," which provides adapted surfing activities for children with disabilities. Initially skeptical about Itamar entering the water with his oxygen tank, Ziv was amazed when volunteers helped him surf safely, sparking a newfound enthusiasm and communication breakthrough in Itamar.

Since then, Itamar has begun to say words clearly, including "sea," and hum the tune of "We Will Rock You" during weekly surfing sessions. His mother credits the sea activities with unlocking emotional and communicative potential previously unseen. The family has also learned sign language to better connect with him.

Ziv, who left her career to care for Itamar, founded an association supporting families affected by the syndrome, now including 50 families, and helped establish a specialized clinic at Sheba Medical Center. Concurrently, a broad research project with Bar-Ilan University aims to improve early diagnosis and understanding of the syndrome in Israel.

The "House on the Sea" organization, founded in 2020, has expanded to four centers nationwide and recently launched "Equal Beach" in Herzliya and Tel Aviv, fully accessible beaches with specialized equipment and staff to enable people with disabilities, including war veterans, to enjoy the sea. The initiative plans to open more such beaches across Israel, advocating for state involvement in accessibility.

Itamar’s story highlights the transformative power of inclusive community activities and medical support for children with rare disabilities, offering hope and improved quality of life for families facing similar challenges.