Sebastian Nicolas Ortiz, the second of our three boys, was born on May 10, 2000. He unwittingly stole the spotlight from his mom Rose’s 29th birthday. Needless to say, she never received a better birthday gift before or since that day.
Our world changed drastically and rapidly after a pediatrician visit in October of 2015. Sebastian felt an irregular mass, which concerned his pediatrician enough to suggest we immediately see a specialist the next day. He ended up undergoing surgery that very afternoon to remove and biopsy the mass.
In October of 2015, Sebastian was diagnosed with rhabdomyosarcoma, a soft tissue cancer. Sebastian’s only treatment option was 40 years old and would have been the same anywhere we sought treatment. No newer treatments were, or to this day are, available.
Sebastian underwent 32 rounds of chemotherapy, 23 rounds of radiation, and 4 surgeries. We watched our son lose weight, his hair, his ability to run, and even his ability to walk. We watched him suffer from the toxicity of his treatments, and ultimately, we lost him.
Sebastian passed away on December 29, 2016, at age 16 after a 14-month battle.
Sebastian embodied what ESPN Sportscaster and Stuart Scott shared while undergoing his own battle with cancer — “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”
By that definition, there’s no doubt that Sebastian beat cancer. Anyone who saw Sebastian could see he was sick, but if you just talked to Sebastian, you’d never know. He never asked “why me”. He lived his entire life and through his entire battle with pediatric cancer with a positive attitude and fought until the very end.
He was a true warrior and embodied the definition of HOPE! We created SebastianStrong to honor Sebastian’s life and create less toxic, more targeted treatment options for kids and families who will face this disease. Kids deserve better. Sebastian deserved better. And together, we can make a difference.