I officially joined KnowTheGlow (KTG) as an ambassador in 2025, but my connection to the organization began years earlier in the mid 2010s through the WeChope and RB Facebook Groups. As a bilateral retinoblastoma (RB) survivor diagnosed at just six months old, my mother, Khaidah, noticed a glow in my eye both in sunlight and a flash photo. I underwent enucleation at nine months. Thanks to her persistence and wisdom, my left eye retained 20/20 vision despite the challenges of treatments, including radiation that impacted my hearing. My mother’s unwavering support shaped my resilience and determination, allowing me to live a fulfilling childhood surrounded by love and encouragement. In 2024, I moved to Diani Beach, Kenya with my mother after the passing of my father. I embraced an opportunity to volunteer as a media ambassador, guiding children to tell their stories while raising awareness about RB. My dream is to create an accessible photography studio for children, blending my passions for creativity, inclusivity, and advocacy.
My passion for photography, which began with a Polaroid camera at age five, grew into a tool for storytelling and advocacy. Over the last ten plus years, I’ve combined this with public speaking and writing, publishing my memoir Seeing Life Through a Different Lens in 2019. Since then, I’ve spoken on global platforms like TEDx and participated in meaningful initiatives to spread awareness about childhood eye cancer, mental health, and the importance of early detection. KnowTheGlow has also featured my story.
Through my role as an ambassador, I will inspire families around the world, especially in Kenya, to recognize the importance of early detection and know they are not alone. Advocacy is my life’s purpose. I will always feel a strong pull to share my story to help others. I’m committed to empowering others, sharing my story, and shining a light for those navigating similar challenges. My journey is proof that even in the face of adversity, we can find purpose, strength, and the ability to make a difference.
