Meet Jaylen, 10, and Ayla 8, both hereditary bilateral retinoblastoma survivors. 
When Jaylen was two months old, his mother, Denice, noticed his left eye veering outward. The family initially overlooked the early photos of his eye glow, thinking it was just a reflection from the camera light. When Denice took him to the doctor for his four-month check-up appointment, the doctor refused them due to a lack of an ASL interpreter. Denice fought right after that, tracking down care entirely on her own until she found another doctor who could help them. Because of Jaylen’s hereditary condition, Ayla was monitored and discovered she also had the same cancer as her older brother. She was diagnosed at just four weeks old.
“It was incredibly heartbreaking and overwhelming to hear the word ‘cancer’ for both of my babies but it was compounded by anger and frustration at the medical system that tried turning a deaf mother away” said Denice, Jaylen and Ayla’s mother. “Hearing that the retinoblastoma was bilateral in both children was terrifying, but after everything it took just to get them diagnosed, I knew right then that I had to lock in, be completely fearless, and become the ultimate advocate and manager for my kids’ health.”
Both Jaylen and Ayla’s treatment plans over the years have included chemotherapy, cryotherapy, laser treatments, strabismus surgery for Jaylen and an eye enucleation for Ayla. Both children have adapted to life with prosthetic eyes.
Denice mentioned that sharing their story online has opened them up to criticism over parenting choices but she has earned the right to have “beautifully spoiled” children and live completely in the present moment. ‘Our triumphs have been absolutely legendary: both kids completely beating cancer, staying endlessly joyful, and Ayla proudly building her collection of custom colored irises so she can swap her eyes out and rock her style whenever she wants! We choose joy, presence, and celebrating life over anyone else’s opinions.’
Instead of letting cancer slow them down, Jaylen and Ayla are thriving and full of joy. Ayla began learning ASL during her immediate post-op recovery and remains fiercely independent, active, and full of life. By proudly sharing their smiles and raising awareness about the Retinoblastoma “glow,” they are proving that there is a full, triumphant, and joyful life on the other side of a childhood cancer diagnosis.
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