Francheska Santos welcomed her first son, Carlos “Juju” Ibarra, into the world on October 31, 2007. Juju showed his magnetic personality early on, for he was always joking or laughing. His family lovingly referred to him as their “little stinky butt,” as he added a cherished element of his one-of-a-kind silliness and joy to their lives. “If I could describe Juju in one word, it was just full of life,” his mother emotionally recalled.
Francheska and her son’s sense of normalcy were put on hold when Juju was only 3 years old. Francheska learned that her son was diagnosed with Diffuse Intrinsic Pontine Glioma (D.I.P.G.), a rare, inoperable brain tumor. She can still feel how she received the news with vivid clarity. “I was at Baystate Hospital in Springfield, Massachusetts, in a conference room with a bunch of doctors, and I felt like my world had ended,” Francheska remembered the devastating moments as if they were yesterday. “Juju had no idea that his life was about to change, and the journey we were about to embark on. And that was so horrific for me, because here I am receiving a terminal diagnosis for my baby boy, and he’s outside just a happy three-year-old.” Francheska didn’t understand how this was possible. Juju was a normal child, full of hobbies and dreams, just like any other kid. He loved playing with LEGO sets and toy cars. He wanted to be a race car driver, and idolized Lightning McQueen. Learning that this vibrant, healthy boy now had a terminal, inoperable tumor felt like a cruel joke to Francheska.
The news of Juju’s diagnosis crumbled the world around Francheska. “My whole world was coming down on me, and life as I knew it would never be the same again. I was about to lose my baby boy.” Nothing would ever be the same; her one and only child, her son, was terminally ill, and there was no hope. The doctors had told her there was nothing they could do; her son’s fate was determined. The painful reality that she was going to lose her son began to set in. However, Francheska couldn’t accept that, as a mom, she needed to find a solution for her child. She was in denial and began googling anything and anyone that could help them. “I began looking for people online, maybe organizations who can help us, or maybe a cure that people don’t know about yet… searching all over to see if there was any little bit of hope.”
Francheska exhausted every avenue she could think of, looking for any group, doctor, or organization she could find that might be able to help her son. “I came across CRF. I found them online, and as I was reading, I saw that they were really working towards a cure and helping families.” She thought there might be a glimpse of hope that CRF could help in any way towards saving her son’s life, or even just giving them more time together. But unfortunately, it was too late, just days after she had reached out, Juju was taken by the horrible monster, D.I.P.G. On September 16, 2011, Carlos “Juju” Ibarra took his last breath on this earth, leaving his mother behind and bringing her world to a jarring halt.
While it was too late for the Cristian Rivera Foundation to help Juju, the mission to help others was far from over. John ‘Gungie’ Rivera, the founder of CRF, was devastated by the loss of yet another child to D.I.P.G. Even in the face of such heartbreaking loss, he knew that he couldn’t sit idly by. He was determined to make a difference. John traveled to Holyoke, Massachusetts, to attend Juju’s funeral, a journey that weighed heavily on his heart. Driving to the service, he was heartbroken by the ghostly nature of the streets. “I remember vividly driving through Holyoke and seeing a bunch of empty buildings, and it just made me sad. And I stopped at an Italian restaurant, and I was the only customer in there.” John recalled how Juju’s service was modest, but the love for him and his family was outpouring. Feeling moved, John reached into his pocket and gave Francheska everything he had that day, offering his financial support in her time of need. Francheska was very grateful for John’s efforts to provide any sense of relief amid such grief. However, John could see that Francheska was clearly not herself; the familiar look of hopelessness was evident through her false mask, leaving him apprehensive about returning to his home in New York.
Life without Juju has been incredibly hard to navigate for Francheska. “The whole world goes on, but your life stops; everyone else’s has continued, but mine didn’t.” She felt like she had lost her purpose the day she lost her only son. If you’re a parent, you have a role you want to fill, but with your child physically no longer here, it can feel incredibly lonely. “That void doesn’t get filled,” Francheska painfully remarked.
During her grieving journey in this new world without her beloved boy, Francheska struggled immensely with the deep emotional pain and the financial distress of the situation; she failed to see a future for her life. She didn’t see the point anymore and contemplated taking her own life. Because of this, her mother reached out to John “Gungie” Rivera. Fearing the path her daughter was on, she asked if there was anything he could do to provide her with a reason to keep living. In response, John invited Francheska to come to NYC, bringing her to dinners with high-profile people, showing her around the town, and taking her to meet other D.I.P.G. families. The experience helped turn her life around. She finally saw a glimpse of hope: “I just didn’t feel alone anymore. I almost felt like I walked into a family that I just met but knew me because D.I.P.G. connected us.” This kind of light in the dark world she was living in gave her a reason to keep going, to carry on, and help others get through it. “I saw that John survived it, and I thought then it’s possible. I can survive this too.”
After learning CRF’s impact and meeting John, Francheska was inspired. “When I saw everything that The Cristian Rivera Foundation is doing, when I see that there are now young women who were diagnosed as children but are still alive, that brings me so much hope. And I want other parents to see that, I want them to see there is hope and I’m not alone, and people are fighting for me.” The feeling of community put her on a path to do great things. “I knew that part of my healing would come in helping others because John helped me, and that started the healing process in me.”
Francheska is grateful for the family CRF offered her, there were many times throughout her journey that were dark and felt lonely, but CRF was able to give her the hope she needed. “Just having that sense of community and having them connect me with other families who are going through what I had gone through, that made a world of a difference.” The support from CRF helped her find the strength to persevere, knowing that she was not alone in her pain and that there are people out there going through the same thing, and they understood her journey.
Francheska hopes that others understand the reality of D.I.P.G. “Once your child is diagnosed, you pretty much lose hope. It’s a monster. It’s horrendous. It breaks apart families.” But there is hope. “We can see the work that the Cristian Rivera Foundation is doing, raising all these funds and having doctors working towards a cure. We have living proof that there are people who have survived so many years post-diagnosis.” After Juju had passed and Francheska had met John and the CRF family, it sparked her to make a change and honor her son. Francheska felt the importance of community and has gone on to share that with many other families who have been affected by childhood cancer. It helps her to feel fulfilled and not feel so lonely anymore. She was able to give back and help other people, and to do it in honor of her sweet boy, Juju.