A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three

Grace Mbugua, KTG Kenya Ambassador and Rb parent, captivated all with a moving talk about her son Christian’s diagnosis in Nairobi, Kenya.

Her journey provided firsthand insight into the challenges patients experience in lower and middle-income countries (LMICs), even with elevated medical knowledge and connections. Despite her training as a nurse, personal relationship with one of Kenya’s few ophthalmologists, and advocacy for a swift eye exam, Christian was not successfully diagnosed until he was seventeen months old and cancer filled his eye.

With this news, Grace recalled her biggest worry was that Christian would not survive, admitting: “As a nurse, I knew back then that no stage 4 patient survived, and I blamed myself because I thought I should have been able to notice the disease before it reached stage 4.”

Due to the severity of Christian’s state, Grace had to hastily accept that her son’s eye needed to be enucleated. She recalled the doctor’s explanation, “If we don’t remove it, the chances of the tumor spreading to the brain are very high.”

Fortunately, staging for retinoblastoma within the eye differs from the cancer staging system Grace was familiar with. The doctor assured her that if they correctly followed treatment, there would be a 96% chance of Christian’s survival.

This hope inspired Grace to take her fear and guilt and push it aside. She said, “I decided then and there that Christian would be part of the 96%.”

Despite her immense determination and courage, Grace still struggled with intense self-blame and depression throughout Christian’s Rb journey. She described how in her time of need, her community did not assist her, but condemned her for Christian’s disease.

“Back then, everybody in my community believed the reason my son had Rb was because I had a child with someone from a different tribe. Kenya is composed of 47 tribes, and some tribes feel that we should not intermarry.

The common belief was that because I had left our people and had a child with another tribe, Christian’s struggle was my fault. Everyone said I knew the rules and customs, but disregarded them, so I was blamed. Although they were kind to my child, they used him as a lesson for the other girls in the tribe, showing them what repercussions would occur if they ignored traditional customs.”

This cruel message and environment formed a fierce pressure that compelled Grace to sacrifice essential needs like sleep. She recalled, “I stopped sleeping because I didn’t want to tell people that I woke up and he was gone.”

Thanks to her journey with psychotherapy, Grace was reminded of her honorable actions. She switched her focus to other Kenyan mothers who have no one to talk to and blame placed on them.

This experience inspired Grace to form Victorious Children Cancer Support CBO, a WhatsApp-based support group for parents of children with cancer. It offers a space for guidance, advice, and connection, and now has over 150 members facing similar challenges.

Through this group, although Grace only has one child, she feels that all 150 children are hers too, because the families share photos and celebrate one another.

Her diligent work led to her attending the International Society of Ocular Oncology (ISOO) Africa conference, held in Mombasa, Kenya, in August 2023. There, she met Megan Webber, and started the path to becoming the Kenyan Ambassador for KTG.

Grace continues her work with both KTG and Victorious Children Cancer Support, empowering parents to share local resources, seek assistance, and ask questions. Her work is fostering a supportive community and raising life-saving awareness about childhood cancer.