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 and 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 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