By Cecilio Torres, Jr.
Founder, Gabriella’s Smile Foundation
Gabriella’s name means “God is my strength” and that is what was exhibited from the moment she was born and was magnified when she was diagnosed with DIPG (diffuse intrinsic pontine glioma), an incurable and inoperable brain tumor, which once diagnosed, only provides children with about nine months of life. She was five years old at her diagnosis.
We were unprepared when Gabriella was diagnosed on March 16, 2015, and verified on March 17 after an MRI confirmed ours and our doctor’s worst fear. We sat in a conference room at The Children’s Hospital of San Antonio surrounded by our oncologist, a nurse and social worker who told us, “Your daughter will not survive beyond 2015. She has DIPG.” These four letters, this diagnosis, sent us into a whirlwind of emotional uncertainty, insecurity and fear of losing our beautiful little Gabriella.
From the inception of our journey with Gabriella having DIPG there was always an important aspect of our daily routine. Regardless of what the day looked like, or what we were struggling with, we made it a point to always ensure Gabriella smiled. Every day! We tried to capture these smiles on camera or on video and always reminded her to smile. We tried to live by this motto as well. Some days obviously were easier than others, but it became one of the strongest foundations in our daily lives. Regardless of what was happening, we were determined to not let the day rob us of a smile. We had an enormous amount of gratitude for life at that very moment. We were thankful to spend each additional day with our little girl and we knew that life could change at any moment. We were grieving her death while she still lived. Happiness of life and sadness of death were all tied in one singular emotion. Our family was grasping to hold on to life, while DIPG was grasping to take it away.
We enjoyed many happy moments with Gabriella. To be exact, we enjoyed 237 happy days with her. They were filled with joy every day, but they were also filled with great fear of what doctors told us would eventually occur. Death. And she did die. Exactly 237 days after she was diagnosed. She died on November 7, 2015. She was six.
While Gabriella was alive, we talked about what we would do should Gabriella pass away. Would we shove DIPG into a corner and pretend we never heard of it before? Would we want nothing more to do with cancer ever again? Or would we decide to make a difference in the DIPG community? These are conversations we had, but really were not ready to decide until Gabriella passed away. Eventually we opted in March of 2016, the month Gabriella was diagnosed the previous year, to start a foundation in her honor.
Many foundations that have started out of a loss of a child and a desire to help find a cure to this extremely underfunded and minimally studied cancer, determine to focus their attention on research.
We chose something a bit different. During our battle with DIPG we were assisted enormously by our local community, and the cancer family community throughout the United States. I believe it is because of this generosity that Gabriella’s Smile Foundation was born. The desire to assist families with financial grants in their greatest time of need was in our hearts. Although research is absolutely necessary and we do support funding research, we believe the greatest contribution, other than a cure, is to help families financially by providing grants to help these families make lasting, forever memories. These families don’t know how much time they will have with their child, but with DIPG it is not long. Our goal is to help families be together by providing financial support so that there is less worry about finances during this time of great need. Their focus should be their child.
We want to support DIPG families in the United States and we have broadened that base to include any child being treated in the San Antonio area who is being treated for any type of brain cancer, including DIPG.
Gabriella had DIPG. She smiled, trusted, believed and was fully confident that she was going to defeat this cancer until the very end. She was STRONG!
Visit our website www.strongerthandipg.org to learn more about Gabriella’s Smile Foundation. Gabriella was a STRONG little girl, as her name means God is my strength, and we have decided that for the rest of our lives we will live a life to honor Gabriella and will always be STRONGER than DIPG.
September is Childhood Cancer Awareness Month. We are pleased to feature the Torres Family and Gabriella’s Smile Foundation in our weekly blog to illustrate how one family copes with their grief by helping others.