When Megan Webber, co-founder of KnowTheGlow (KTG), reconnected with Zaakirah Nayyar at the One RB World Conference in Hawaii in October 2024, it felt like a moment long overdue. Their paths had crossed before through the WeChope and RB Facebook Group, but this was the first opportunity to truly share Zaakirah’s inspiring journey with the KTG community. Today, Zaakirah’s advocacy for childhood eye cancer survivors and her remarkable story of resilience and empowerment shine as a beacon of hope and awareness for families worldwide.
Zaakirah’s name carries a prophetic beauty. Her first name means “afterlife,” and her middle name, Nayyar, means “bright light”—a poetic prelude to her journey as a survivor and advocate. Diagnosed with bilateral retinoblastoma (RB) at just six months old, Zaakirah’s story began when her mother, Khaidah (whose name fittingly means “wise one”), noticed a glow in her baby’s eye. The glow first caught Khaidah’s attention in sunlight, but it was a flash photo that confirmed her suspicions. Trusting her instincts, Khaidah sought medical advice despite being told by a pediatrician not to worry. Her persistence led her to an ophthalmologist, who diagnosed Zaakirah with RB. At nine months of age, Zaakirah underwent enucleation at Bascom Palmer Eye Institute in Florida under the care of Dr. Timothy G. Murray.
Though her RB diagnosis came with challenges, Zaakirah’s spirit remained undeterred. Despite losing some hearing due to radiation treatments, she maintained 20/20 vision in her left eye and participated in sports, ensuring she never felt excluded. Her mother’s unwavering support and determination to provide her with a fulfilling childhood set the foundation for Zaakirah’s future.
Photography became a transformative outlet for Zaakirah. Introduced to a Polaroid camera at age five, she discovered her passion for capturing life’s beauty. Later, in speech therapy, she found journaling as a means to express her emotions. These creative pursuits laid the groundwork for her advocacy journey. Encouraged by a high school guidance counselor, Zaakirah developed confidence in public speaking, a skill that would later amplify her voice in sharing her story.
Zaakirah published her memoir, Seeing Life Through a Different Lens, in December 2019, a project that began as a blog chronicling her experiences. The book, which includes insights from her mother, has resonated with readers worldwide. From virtual book tours to a powerful TEDx talk in March 2020, Zaakirah’s voice continues to reach audiences, educating them about RB and the importance of early detection.
Her advocacy has taken her around the globe. From her first volunteer trip to Ghana in 2011 to recent work in Kenya, Zaakirah has combined her love of photography with a commitment to accessibility and inclusivity. In October, Zaakirah and her mother started a new adventure by moving to Kenya following her father’s passing in April 2024. In Kinondo (Kwale County), a coastal town near Mombasa, Kenya, Zaakirah embraced a volunteer opportunity as a media teacher, empowering children to tell their stories while raising awareness about RB. Her dream of establishing an accessible photography studio for children aligns seamlessly with her mission of advocacy.
Zaakirah’s work in Kenya also highlights the critical need for eye health education. She collaborates with KTG’s ambassador, Grace Mbugua, to promote free eye screenings and integrate RB awareness into local healthcare initiatives and we are excited to share that Zaakirah is becoming a KTG ambassador herself. By advocating for early detection and supporting families impacted by childhood eye cancer, Zaakirah continues to honor her journey and inspire others.
Zaakirah Nayyar’s story is a testament to resilience, purpose, and the power of advocacy. Her journey—from a childhood marked by challenges to a life dedicated to empowering others—illuminates the path for countless families navigating similar struggles. Her bright light, much like her name, continues to shine, leaving an indelible impact on the world.
