When Co-Founder Megan Webber and Director of Global Outreach Helene Dameris of KnowTheGlow recently connected over Zoom with WE C Hope volunteer and Child Life Specialist Morgan Livingstone, the conversation quickly became far more than a routine meeting update. What unfolded was a deeply emotional account of persistence, advocacy, and one woman’s refusal to look away from a child in crisis.
Morgan had recently returned from a surgical cleft lip and palate mission in Madagascar where she encountered a young child whose eyes immediately raised alarm bells. While the mission focused primarily on facial reconstructive surgeries, Morgan recognized that this child who had clear vision challenges was also presenting with something others had missed. The child had glows in both retinas and having worked with Rb families for so many years, Morgan knew those glows to be signs of bilateral retinoblastoma, a rare and life-threatening childhood eye cancer.
What troubled Morgan most was not simply the diagnosis itself, but that the child’s condition appeared to have been undiagnosed despite being visible. As she recounted the experience to Megan and Helene, it became clear just how determined she had been to push beyond the limitations of the mission’s original scope. Morgan repeatedly advocated for the child to receive urgent ophthalmic care, insisting that cosmetic surgery alone could never address the far more dangerous reality threatening the child’s life.
Her persistence eventually led to the child being referred for specialized treatment. The road that followed was neither simple nor inexpensive. Morgan explained that the child ultimately underwent bilateral enucleation surgeries in an effort to save her life. The second surgery alone cost approximately $600, a sum Morgan paid herself, in addition to transportation and housing costs for the family. She spoke candidly about the emotional complexity surrounding the decision, particularly the fears expressed by the child’s grandparents, who struggled with the idea of removing both eyes. Yet Morgan knew the alternative could be fatal.
Throughout the conversation, Megan and Helene listened as Morgan described the difficult realities families face in regions where retinoblastoma awareness and specialist access remain limited. Delays in treatment, confusion among local providers, language barriers, and fragmented systems of care can mean the difference between life and death. Morgan also credited another volunteer, Linda, whose relentless follow-up and advocacy helped keep the family connected to care during critical moments.
Despite the challenges, the story also carried moments of extraordinary compassion. Morgan shared that ocularist Matthew Milne had generously offered to create prosthetic eyes for the child free of charge. Plans are now underway to coordinate fittings to help support the family and local providers.
For Megan and Helene, the conversation reinforced many of the reasons KnowTheGlow continues to focus so heavily on awareness and early detection. Morgan’s experience illustrated how one informed individual recognizing “the glow” can completely alter the course of a child’s life. Had she remained silent, the outcome could have been tragically different.
The meeting also sparked larger discussions about the future. Morgan hopes to organize a dedicated retinoblastoma training program in Madagascar, potentially bringing together French-speaking African physicians and specialists to strengthen local knowledge and referral pathways. Megan and Helene discussed helping convene additional stakeholders for a Madagascar-focused follow-up conversation aimed at building more sustainable awareness and education efforts in the region.
By the end of the call, what remained most striking was not simply the medical intervention itself, but the humanity behind it. Morgan’s willingness to keep asking questions, to challenge assumptions, and ultimately to personally shoulder financial and emotional burdens for a family she had only just met became a powerful reminder of how advocacy often begins: with one person choosing not to walk away.
