For most kids, social media is a place to share photos and funny quips with their friends and family. For 12-year-old Ayala Ohana, it’s become a venue for sharing something most people keep hidden: her experience living with a rare genetic illness. She’s already amassed over half a million followers, and at this summer’s World Cup, she was offered an opportunity to reach millions more.
Ayala was chosen by Kia as the only child representing Israel at the World Cup, selected to present the ball on the field at MetLife Stadium in New Jersey in front of tens of thousands of cheering fans and a global audience watching from home. It’s a spotlight most children could never imagine, yet it’s one that Ayala earned through the honesty and courage of openly sharing her story.
Photo by Fauzan Saari
Ayala wasn’t chosen for her connection to any famous soccer players or members of FIFA. She was chosen because she’s been outspoken about her experience living with Gaucher disease, a rare inherited condition. While most people would be reluctant to expose such a vulnerable part of themselves to the world, Ayala decided to share it openly online with the help of her father, fellow content creator Hananel. In their videos, she describes her day-to-day life-the triumphs, the drawbacks, and the little moments in between. Her honesty and unguardedness drew in hundreds of thousands of followers eager to learn from her experience.
Shining a light on something so personal has not only brought awareness of inherited conditions to hundreds of thousands of people, but has also changed Ayala’s own perspective on her disease. As reported by ynet, Ayala began to see a shift in the way others saw her once they heard firsthand what it was like living with her condition. Her optimism and resilience have made her a role model for many young people struggling to overcome hardships both big and small. With such a massive platform, Ayala has shown what knowledge and openness can do for both one individual and the many others who hear their story.
Ayala’s platform is unique, but the reality of living with an inherited illness is tragically common. Gaucher disease is one of many inherited conditions that can be identified through genetic screening. Advocates have worked tirelessly to spread awareness of these tools in the hope that families who understand their options as early as possible can be more empowered in their decision-making. By sharing her story, Ayala has helped drive the conversation about genetic conditions and their impact on so many families like hers.
jscreen, a national nonprofit dedicated to genetic education and screening, is one of many groups encouraging that conversation. The organization offers access to at-home genetic testing kits that screen for conditions like Gaucher disease and others, many of which have a higher occurrence in the Ashkenazi Jewish community. Individuals and couples can undergo either Hereditary Cancer Testing or Genetic Carrier Screening, after which they’ll be paired with a licensed genetic counselor to interpret the results and determine next steps. By making genetic testing affordable and accessible, the organization hopes to eliminate barriers for families seeking information about their genetic profiles.
“Ayala reminds us that information is most powerful when it is shared with honesty and heart," said Dr. Matt Goldstein, CEO of jscreen. “She has helped a huge audience see that talking about an inherited condition is nothing to be ashamed of. At jscreen, our work is to make sure that when people are ready to learn about their own genetic health, the door is open and the support is there."
Ayala has already done so much to inspire, educate, and uplift people with her social media platform. The World Cup is simply another opportunity for the world to see her spirit and learn from her example of self-acceptance and resilience. For many people, it may be the first step toward understanding a condition they might never have heard of otherwise.
More information about genetic screening is available at www.jscreen.org.