Two parents stood outside the ward, staring through a plastic screen, watching their child. Monitors of all sorts are found around the young patient with robotic nurses surrounding them. The child has no idea what is going on. The room is filled with tubes and blank, unfeeling monitors, harsh lights piercing the eyes of any viewer with a sense of despair. Some days, it is a struggle to even keep their eyes open. And yet, they struggle with the fullest extent of strength they have left. Whether it is through any strength of will or just sheer desperation, no one would ever know. But they keep fighting a battle unseen by all except their parents, viewing from behind a plastic screen, tears rolling down their cheeks.
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.