Israeli Boy With Rare Syndrome Finds Joy and Speech Through 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 testing, Itamar has faced significant developmental delays, including speech difficulties and respiratory failure that requires him to use a portable oxygen tank continuously.

Living near Sheba Medical Center for emergency care, Itamar’s family has devoted themselves to his care, learning sign language and communication boards to connect with him. Two years ago, Itamar began participating in activities with the nonprofit "House on the Sea," which provides adapted surfing experiences for children with disabilities. Initially skeptical, his mother was amazed when volunteers helped Itamar enter the water safely with his oxygen tank secured to his surfboard.

Since then, Itamar has shown surprising breakthroughs, including clearly saying the word "sea" and humming the song "We Will Rock You" during weekly surfing sessions. His mother credits the sea activities with unlocking new levels of happiness and communication that had not been seen before. The family’s experience inspired Ziv to establish an association supporting families affected by this syndrome and to advocate for specialized medical clinics and research in Israel.

"House on the Sea" has expanded its reach with 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 organization plans to open more such beaches across Israel, aiming to influence state policy on accessibility.

Itamar’s story highlights the challenges and hopes of families living with rare genetic disorders and the transformative power of inclusive community activities.