The story of Ayala Ohana, a 12-year-old girl selected to represent Israel at the tournament, has brought greater awareness to those living with inherited conditions.
12-year-old Ayala Ohana was selected by Kia to represent Israel at this summer’s World Cup, given the honor of presenting the ball on the field at the match between France and Senegal at MetLife Stadium in New Jersey. It’s a dream come true for any kid, but for Ayala, it’s much more than just a moment in the spotlight. It’s an opportunity to bring her personal story to an even wider audience, raise awareness of genetic illness, and inspire people across the globe.
As reported by ynet, Ayala lives with Gaucher disease, a rare genetic disorder. Unlike many people who live with inherited conditions, Ayala decided not to keep her experience private, but to share it openly and honestly with the world. Over the past few years, with the help of her father Hananel, she has built a social media following of over half a million people to whom she shares pieces of her daily life.
For many, Ayala’s story is the first they’ve heard of an illness like Gaucher disease. Her posts offer insight into the reality of living with a genetic disorder, raising awareness of the disease and making Ayala something of an advocate, if not an inspiration. The story of one girl and her family has spread well beyond her community, reaching hundreds of thousands and, with the World Cup match, a new global audience.
According to ynet, Ayala has spoken publicly about the difficulties she’s faced living with the disease. Sharing her story online, however, has proven to make a difference for both herself and others. With every post, picture, and caption from Ayala’s life, people gain more understanding of her as a person, and that understanding has helped her go from feeling different to feeling seen.
Families who’ve dealt with genetic illness understand the impact that awareness and understanding can have. Advocates have long championed genetic screening as a tool for gaining a greater understanding of one’s genetic profile. They’ve worked hard to give people more information about their options, offering guidance and support when needed. Gaucher’s disease is one of many inherited conditions that genetic screening can identify, which is why Ayala’s decision to speak so openly about her life has played such an important part in raising awareness.
Organizations like jscreen, a national non-profit that promotes education and provides access to at-home testing, are one of several staunch advocates for the tool of genetic screening. Its program screens for a broad range of genetic disorders like Gaucher disease, giving individuals and couples more information on their genetic profiles to better inform their decision-making. jscreen pairs every participant with licensed genetic counselors to help explain the results and offer insight into available options. Its mission is to make genetic testing simple, affordable, and accessible to every family that wants it.
Photo by Igor Batista
“Stories like Ayala’s do something remarkable: They make a complex subject feel human,” said Dr. Matt Goldstein, CEO of jscreen. “When people see a young person living openly and bravely, they begin to ask their own questions about family history and inherited health. Our role is to make sure that curiosity has somewhere to go, and that the information people find is clear, supportive, and theirs to act on.”
Ayala’s presence at the World Cup is certainly a shining moment for the young girl. But by bringing her story to one of the world’s most-watched events, she’s a part of something much bigger than just herself. Despite her young age, she’s done more to advance the understanding of genetic disorders simply by being her true, authentic self.\
Those interested in learning more about genetic screening can visit www.jscreen.org.
Source: Details about Ayala Ohana are drawn from public reporting by ynet. “Israel’s only representative at the World Cup is a 12-year-old girl,” by Sharon Kidon, ynetnews.com, June 5, 2026.
This article was written in cooperation with Tom White