Santiago Buther is my hero and a warrior. Like most heroes, he has an origin story that explains how I came to that conclusion. Santiago was born in 2010 and during his early years he showed glimpses of greatness. Santiago had these chocolate brown eyes that glistened when you looked at them and they were so expressive. As an infant he loved music and dancing and developed this magnetic personality. His sister Arianna was born in 2012 and now he had that partner to play with. They loved Power Rangers and dressed up and battled evil doers non-stop.
When he got older he showed a passion for sports especially soccer which he destroyed the house, playing with daddy all day. Soon he started school and that is where his magnetic personality just radiated off of him. He captivated teachers and students alike, always finding himself the center of attention. Then in 2018 we noticed Santiago not acting like himself. A graceful soccer player and athlete became clumsy, an energetic child became lethargic and always tired. We took him to the doctor and our greatest fears were realized, Santiago had cancer.
Santiago was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) which is a terminal, aggressive form of cancer which occurs in an area of the brainstem (the lowest, stem-like part of the brain) called the pons. The pons control many of the body’s most vital functions such as breathing, blood pressure, and heart rate. It is inoperable and currently has no cure. It is so aggressive most children are given 90 days to survive and typically told to “make memories” as the only course of action.
We were devastated, we were overwhelmed and we felt hopeless. The doctors immediately conducted a biopsy and we were told our only course of action would be to find a clinical trial and start radiation treatments. Santiago, like the hero he is, swallowed his fears and fought. We went to St. Jude’s Children’s Hospital in Memphis Tennessee to begin our treatment. Santiago’s body initially started to see the effects of the tumor very quickly and in that first month he went from walking to needing the use of a wheelchair. Santiago never complained and instead worked so very hard to make the most of every moment. He started radiation treatment and initially had to do so under anesthetic. Santiago started to show his heroic qualities fighting hard to be able to undergo the treatments awake, which accelerated his recovery. Then, like the hero he is, he started to show signs of improvement. We had to celebrate Christmas at St. Jude’s in the Ronald McDonald’s House and although he was improving he was not close to what he once was.
Heroes press on even when things look bleak, Santiago did the same. Santiago took the small victories and worked harder to turn them into miracles. In two months time, Santiago was out of a wheelchair and in the weight room. He would work out with the whole family looking on and eventually got well enough to get back onto the soccer field.
He shocked his doctors and therapist with his recovery and he was able to go home while taking his chemotherapy medication. He went back to school and was hailed as the hero he is and he was so happy getting back to normal. We enjoyed months of normalcy until the day we saw an old symptom return and we knew that meant that the tumor had returned.
We scoured the planet for another treatment possibility and were blessed to find the only one that would take him at Cincinnati Children’s Hospital. Unfortunately, the tumor was incredibly aggressive and Santiago’s symptoms progressed. During this time it would have been easy to hide away but Santiago didn’t want to. He still fought and fought to be active and to show others that there are no limitations that can’t be overcome with perseverance and hope. He played, he laughed and he loved with every breath he took.
On January 17th 2020, Santiago transitioned from earthly warrior to warrior angel. The true measure of a hero is the legacy he leaves behind. Santiago continues to inspire others through his story of courage, strength, faith and love. The SantiagoStrong Foundation has been created to continue that legacy by helping others.
Santiago’s favorite color has always been red and when Santiago was diagnosed everything happened so fast. We were given a week to be at home prior to leaving for St. Jude’s. I wanted to give him something prior to the trip as all of our lives were flipped upside down, but his was the most.
I ordered him the just released Steph Curry’s sneakers in all red. They arrived the night before we left so it was a nice treat for him. Once we got to St. Jude’s we saw so many kids just like us fighting against cancer. Each family had shirts made with their kids’ names on it and rubber bracelets for their cause. I was overwhelmed and out of my element. Santiago has always been the one that had the magnetic personality. I liked to keep to myself and not draw attention. After our first week, I realized that the doctors and medical staff saw so many families that were at their worst. I wanted Santiago to see nothing but positivity and hope but I needed something to help me break out of my shell so I could show them his personality and show the world our special relationship.
I then bought my first pair of red shoes to match his. Very quickly we became known as the “Red shoe boys” and people all over started to notice us and remember us wherever we went. It gave us an opportunity to talk about our journey and made Santiago like a rockstar in the halls of the hospital. It somehow took away my apprehensions and gave us the freedom to completely be ourselves no matter where we were. Then I got red shoes for the entire family, everywhere we went it became a conversation starter and we showed solidarity.
When Santiago passed, we continued to wear the red shoes and I own nothing but red shoes. It continues to be a conversation starter and gives us multiple opportunities to talk about Santiago and our fight against DIPG. When we all go places in our red shoes it is a visual reminder of the bond our family has together. It shows how we support not only Santiago but each other as we battle grief. When I see someone else wearing all red sneakers it makes me smile and makes me feel SantiagoStrong!
Submitted by:Cynthia Buther