Remembering Cristian Alexander Rivera

Today marks twelve years since the passing of my son Cristian Alexander Rivera. Cristian is remembered for all of the love and joy that he brought to me and everyone he met. I reflect on some of these cherished memories today. Cristian’s legacy continues to live on through the Cristian Rivera Foundation as we work “Full Steam Ahead” to defeat DIPG. Since its founding, our organization has been able to make a huge impact on the DIPG community in Cristian’s honor.

Cristian Alexander Rivera was born on Friday, September 13, 2002. He was an extremely bright, happy, energetic, and affectionate daddy’s boy. On January 22, 2007, 4–year-old Cristian was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), which is a rare brain tumor located in the stem of the brain. Cristian fought his battle with DIPG for 2 years and a few days. I never gave up hope and prayed that God would heal him. Cristian did his best to fight against this horrific disease, but on January 25, 2009, he passed away in my arms.

Cristian loved doing everything with me. He enjoyed watching TV, going to Central Park, and even accompanying me to work. While Cristian was in Puerto Rico, he would spend time visiting with his mom’s family and eating lots of good food. Cristian also enjoyed swimming in the pool with me at the Ritz Carlton. He was an avid animal lover and had a cat named Tico. Tico kept him company often and became one of his best friends.

Cristian also developed an immense love for trains from an early age. Some of my fondest memories of Cristian are of our time together at Toys “R” Us and FAO Schwarz – Cristian’s two favorite stores. He would spend hours in the trains section playing with trains on the store’s tracks as well as looking at all the new toys and collectibles. Cristian was also expanding his incredible Thomas the Train collection by buying rare trains on eBay and he would remind me when new ones were coming out. I loved spending quality time with my son.

Daily visits to my grandfather were filled with special memories as well. However, one day my grandfather pointed out that something was off about Cristian. I then took Cristian to the park and noticed that he kept falling while playing soccer. From that point, I started to notice other changes in him as well. Cristian started drawing and writing with his left hand when he was usually right-handed. This prompted me to take a visit to his school and ask his teachers if they noticed any changes and they confirmed my concerns. That day on the way home from school, I asked Cristian to squeeze both of my index fingers with each hand. His right side was noticeably weaker. I soon brought Cristian to the doctors for evaluation and it was then that he was diagnosed with DIPG.

After months of navigating DIPG and struggling with its symptoms, one of the best memories I had with my son was watching his brief recovery. From March to August 2008, Cristian bounced back from this horrible illness. It was like he was his normal self again. He regained his mobility, energy, and facial functions, and for six months we lived life to the fullest. It was a time filled with immense joy and hope for my family. I believed that Cristian had beat DIPG and became excited about his future.

Although my hopes did not come to fruition, it is undeniable that Cristian’s impact still has the power to bring hope to other families – even 12 years after his passing. Cristian and all of the other DIPG angels continue to live on in us through timeless memories and how they motivate us to create real change in the world. Our foundation continues to work in Cristian’s honor toward a cure and provides support and hope to families experiencing what I went through. No one should have to suffer from this disease or watch their child die from it. We will continue to fight until a cure is found. Cristian, I think about you all the time, but today, you are especially on my mind and heart. I love you 10!

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