In the heart of London, at The Royal London Hospital, two remarkable women quietly transform the lives of young patients battling retinoblastoma (RB). Gemma Melisi, a seasoned Play Specialist, and Charlotte Clifton, a Clinical Nurse Specialist, lead a small and mighty team additionally including a psychologist and an orthoptist, dedicated not only to medical care but also to ensuring emotional and educational support for their young charges and their families.
Their journey intertwines with the global outreach efforts of KnowTheGlow, as KTG continues to raise awareness and support families affected by RB worldwide. Megan Webber, Co-Founder of KnowTheGlow, first connected with Gemma and Charlotte through Helene Dameris, Director of Global Outreach, who was deeply impressed with them when she met them at this year’s EURBG conference in Athens, Greece.
Gemma, with over a decade of experience at The Royal London Hospital, specializes in helping children cope with the anxiety and challenges of medical treatments. Gemma recently met a young patient of Dr. Ashwin Reddy’s whose journey with retinoblastoma was transformed by KnowTheGlow’s support, marking her introduction to the organization. Gemma’s days are filled with art projects, puzzles, and storytelling sessions designed not just to distract, but to empower her young patients. Gemma’s involvement with Spread a Smile, an organization bringing entertainers and treats to hospitalized children, highlights her commitment beyond medical care.
“I saw a gap in resources for children with RB,” Gemma shared during the Zoom call. Her predecessor had created books and resources to help patients and their families, but she felt there was still a need for additional books to help children who didn’t have the memory of their RB surgery because they were infants at the time. “That’s why I started writing preparation books for the children explaining their condition in simple terms, to make it less scary for them and easier for parents to explain.”
Charlotte, on the other hand, manages the clinical aspects of RB treatment at The Royal London Hospital. Her role involves coordinating the children’s cancer pathways, ensuring families understand their treatment plans and ensuring seamless journey from the start to end of treatment.
Their collaboration extends beyond hospital walls. Gemma’s recent volunteer work in Tanzania, organized through The Mighty Roar Foundation, underscores her dedication to spreading her expertise globally. Charlotte, meanwhile, focuses on enhancing care locally, advocating for more child life specialists across the UK and Europe.
“We’re more than just medical professionals,” Charlotte emphasized. “We’re here to support families holistically, emotionally, and practically.”
Their initiatives, such as the Eye Club for children with prosthetic eyes, funded in part by Barts’ Charity, exemplify their innovative approach. The Eye Club welcomes children with prosthetic eyes during school holidays, providing a supportive environment where they learn from designated “teachers” experienced with prosthetic eye care. Participants earn badges by completing step-by-step tasks on stamp charts, empowering them to become mentors themselves. After a session of hands-on learning, families reunite for a celebration at the hospital, enjoying activities like pizza parties or bowling, and connecting with other families facing similar challenges. Spread a Smile joins in, adding festive touches like face painting and arts and crafts, supported by funding from Barts’ Charity. The club not only teaches children how to care for their artificial eyes but also fosters a supportive community where families can connect and celebrate milestones together.
Looking forward, Gemma dreams of expanding the Eye Club model nationwide and beyond. “Every child with RB should have access to this kind of support,” she said passionately.
As they continue to impact young lives and advocate for better resources, Gemma and Charlotte embody the spirit of compassion and resilience. Gemma extends her support beyond the hospital through school visits, where she educates children about eye conditions. These visits are particularly beneficial in preparing classmates for situations where a child’s prosthetic eye may become dislodged, easing any discomfort or curiosity. By addressing their questions directly, Gemma helps create a more understanding and supportive environment for the child with retinoblastoma. Their work goes beyond medical protocols—bringing joy, understanding, and a sense of community to every child and family they touch.
In a world where medical care often focuses solely on the physical, Gemma and Charlotte remind us of the profound impact of emotional support and human connection, one child at a time.
