Two parents stand outside the ward as they stare at their child through a plastic screen. Monitors buzz and wurr near the young patient as robotic nurses surround them. The child has no idea what is going on. The room is filled with tubes, machines, and harsh lights which pierce the eyes of its viewers. Despair is all the family feels. Some days, it is a struggle for the child to keep their eyes open. It is a struggle to function with their dwindling strength. It is unknown whether this strength comes from power of will or sheer desperation, but they keep fighting. This a battle unseen by all but the parents who watch, who feel the pain of their child and wish they could take it away and bear it for them.
Diffuse intrinsic pontine glioma (DIPG) is a tumor of the nervous system that is located in the pons of the brain stem, according to this article by Dr. Green at the St. Baldrick’s Foundation. The name, glioma, refers to any tumors that develop in the supportive tissue of the central and peripheral nervous system, also known as the glia. The glia helps to keep neurons in place and functioning through responsibilities like forming the blood-brain barrier or regulating the flow of blood to the brain. This particular form of cancer affects glial cells in the pons.
The illness has a 5-year survival rate of 2%, according to an article by DIPG.org. The article also states that this devastating illness can cause a variety of symptoms, such as double vision, difficulty walking, or extreme headaches. For a more complete list of symptoms, please view this article by the Weill Cornell Brain and Spine Center. DIPG can devastate an individual’s ability to live their life by what we consider “normal” standards. Everyday activities become extremely difficult and families are heartbroken over this diagnosis. In essence, more often than not, DIPG is a diagnosis of death.
There is still some hope. There are plenty of clinical trials available, as seen here, on the DIPG.org website. At the Cristian Rivera Foundation (CRF), we are funding current research into the disease with multiple doctors at various institutions. Though there are many clinical trials available for treatment, wait lists, eligibility to participate, and procedural costs often pose obstacles for DIPG families to access treatment. Therefore, we also help current DIPG patients access clinical trials, such as 3-year-old Emiliano Bermejo who we were able to secure his treatment in Dr. Souweidane’s Convection Enhanced Delivery (CED) trial. The foundation is dedicated to helping everyone suffering from this disease. Our family here at CRF includes many DIPG warriors, like Jace and Maria, as well as their parents and loved ones. While the initial prognosis may seem unhopeful, this is something that our foundation is trying to fight. By funding further research and raising awareness about DIPG, we hope to draw more attention to this disease and work towards a cure.
The Cristian Rivera Foundation is an organization that espouses hope. When your child is diagnosed with a life-threatening illness, it’s easy to feel as though they are locked in an inescapable pit and that walls of despair are slowly crushing you. CRF aims to provide a glimpse of light through constant advocacy and material help. The goal of our foundation is to provide some hope to struggling families and patients, all in the memory of Cristian Rivera, another bright soul claimed by DIPG. In providing hope to others just like him, the foundation commits itself to the truest act of devotion we can make to his memory.