02/28/2026
When JuJu and Serenity were born, their family never imagined they would be navigating two rare disease journeys at the same time.
In 2021, JuJu was diagnosed with CLN2 Batten disease, a rare and progressive neurodegenerative disorder that causes a gradual loss of skills. His diagnosis changed everything, introducing his family to a world of complex medical care, uncertainty, and relentless advocacy. Over time, the halls of GCH became familiar as JuJu received ongoing treatments surrounded by a team that knew him well.
Years later, those same hallways took on new meaning when JuJu’s younger sister, Serenity, was born with a complex congenital heart condition. From her earliest days she required lifesaving care, including multiple heart surgeries and ongoing support in the ICU. At just 23 months old, she is quite the fighter!
For JuJu and Serenity’s parents, returning to the hospital as both rare disease and heart parents felt surreal and deeply full circle. Their experiences have shaped their family’s purpose. What began as advocating for their own children grew into a calling to support others, leading to the creation of the JuJu & Friends CLN2 Warrior Foundation and mom Cristina's participation on the GCH Patient Advisory Council. Through awareness, support, and hope, their family continues to fight not just for JuJu and Serenity, but for every family navigating a rare diagnosis.
