Building a Kinder World for Ayala: One Family’s Journey

As parents, we dream of raising children who feel welcomed in a fair world—a place where kindness outweighs curiosity, and respect is a birthright. But when five-and-a-half-year-old Ayala Ochana was born with Gaucher disease, her dark under-eye shadows made her a target for stares and unkind whispers. Her father, Chananel, knew he had to transform that pain into confidence—and to teach society to meet difference with care, not judgment.

Gaucher is a rare genetic disorder that in Ayala’s case led to low platelets and easy bruising. At first the family mistook her frequent nosebleeds for childhood quirks. But when her tummy swelled and the flu lingered for two weeks, tests revealed an enlarged spleen and, eventually, a diagnosis that felt like a second shock after Chananel’s own brother’s tragic loss. “On the way to the hospital,” Chananel recalls, “I prayed: ‘Give me time to process. Give me measured doses of strength.’”

Doctors initially feared leukemia, and Ayala endured weeks of uncertainty in the hospital. When they learned it was Gaucher, the relief was immense—but the real work was just beginning. For four months, Chananel and his wife, Stav, never left her side. They comforted her during enzyme‐replacement treatments, and when she cried, they reminded her, “You are our gift.”

Most remarkable of all was Ayala’s own courage. On her first day of kindergarten after diagnosis, she stood before her classmates and explained, in her clear, brave voice, why she needed extra care: “I have fewer white blood cells, so my body sends helpers to fight unseen battles. If you’re sick, please stay home—so you don’t pass germs to me.” The teacher was stunned; the children listened in wonder.

Every day, the Ochanas reinforce one truth: difference is not shameful. When strangers blurt out questions—“Why doesn’t she wear makeup?”—Chananel invites them to ask privately, away from Ayala’s ears. “Even our little ones understand more than we think,” he says. “A respectful question shows concern, not cruelty.”

In a moving online post, Chananel shared Ayala’s tears after cruel taunts in a shopping mall: “Dad, I’m not pretty,” she sobbed. He responded with a song he wrote for her: “Even in shadowed eyes, your light shines bright.” Their message is clear: Mutual responsibility and solidarity are our true measure of progress.

Today, Chananel urges genetic screening for all communities—Moroccan, Persian, Ashkenazi—to catch diseases before they threaten a child’s life. But his deepest hope is that every child like Ayala will grow in a kinder world: one where difference sparks understanding, not fear.