Eight years ago, a perfect and beautiful boy named Santiago was born. When he made me a mother that day, my husband and I experienced joy in ways we had never known possible. Santiago remains perfect to me, and the joy he creates is still very real. But our life looks quite different than what I imagined when I held him in my arms that first time. Instead of counting grades, activities, sports scores or childhood crushes, we count procedures, medications, and vital signs.
Why? When Santiago was four, he was diagnosed with metastatic Medulloblastoma, which is a type of brain tumor that only children get.
Cancer was frightening, and the treatments were difficult. But Santiago continued to walk and talk like a normal child. He was the same free-spirited child with the same devious sense of humor we all loved. Until August of 2016, when an injury resulting from radiation treatments changed everything.Santiago’s brain stem suffered from massive necrosis as a result of harmful radiation
. Necrosis is defined as the death of living cells inside the body. As a result, my beautiful, perfect boy is still with us on the inside, but he can no longer show it on the outside. He is cognitively present but physically paralyzed.
Santiago is unable to move, speak, swallow, or even breathe on his own. He now requires ventilatory support, nutrition via a gastric tube, and full-time medical assistance. He can only shift his eyes and mouth ever so slightly to communicate with us. Those momentary glimpses of our precious boy are what fill us with hope and fuel us to continue working toward our dream of a full recovery.
Our son became a victim of the “standard of care,” which includes harmful and often barbaric ways of treating childhood cancer. Good “survival” rates seem to outweigh the need to find new, innovative cures that do not disable the very patients they are trying to help. Today, despite advances, childhood cancer patients have very few options with respect to treatment.
After enduring all this, on November 15, 2017, we received the worst news a parent could ever hear: “The tumors are back, and your son has six months to live.” We refused to give up on our son and researched endless ways to save his life. What we found was a brick wall where nobody wanted to treat Santiago because of his paralysis. The same medical system that paralyzed and nearly killed him turned its back, refusing to give us access to the latest available treatments via clinical trials. We were devastated beyond belief. How could they deny treatment because he is not able to walk? Do they not take into account that our son is still there on the inside, can smile, cry and communicate with his eyes? Does that not matter? Does our son’s life not matter?
Santiago’s recovery is a long-term process and we are committed to doing everything in our power to continue to provide for him.
However, we have limited resources from health insurance and require help to sustain his care in the long run.
On behalf of my Santiago and my family, we thank you for your time to read our story. If you wish to follow Santiago’s story, you can do so on Facebook at “Thumbs Up for Santiago
.” Please pray for a miracle for my boy, my baby, my world.
God bless you.
Santiago with his parents
Claudia prepares Santiago's daily food and treatment
Santiago's father sits in front of a small portion of the things needed for Santiago's care