Emiliano Bermejo is a cheerful 4-year-old boy who was diagnosed with DIPG in May of 2020 and has now been living successfully with DIPG for almost 2 years. When Emiliano’s parents, Josue and Andrea, were first told about their son’s DIPG, they were very afraid, never having heard of the disease before.
Emiliano is from Mexico, and at the time of his diagnosis, there were no clinical trials taking place there, meaning his family had little hope for treatment. However, through a great deal of research, Emiliano’s parents were able to find the name of his disease in English (DIPG) and begin to look for clinical trials to treat the young Emiliano in order to fight his cancer. Josue and Andrea revealed that due to language differences, receiving medical help in America was a challenge at first. However, every specialist they saw was someone that was recommended to them and they said that all of the doctors they have met here in the states have been extremely welcoming and warm to their sweet little boy.
They connected with CRF through social media, after making accounts across several platforms in order to fundraise for Emiliano’s treatment in America. CRF was able to connect Emiliano with Dr. Souweidane and provide assistance to his family while they stayed in New York during his first clinical trial. Emiliano underwent a second clinical trial at Johns Hopkins in May of 2021, which he, unfortunately, had to be removed from due to nutritional issues that had the potential to complicate his treatment. Currently, Emi and his parents are awaiting MRI results to determine whether or not he is eligible for another clinical trial in Miami.
Before his diagnosis, Emi was walking and eating on his own, and learning how to talk. Now, after almost 2 years of not being able to do these things and lots of physical therapy and speech therapy, Emi is back to becoming an independent young child. Andrea and Josue have adopted the mindset of living in the present and take Emi’s progression journey day by day. “Before Emiliano was diagnosed, to be very honest, we were always thinking about the future, about plans, and what to do what’s next, what’s now- in all senses, personal and professional. But he got diagnosed and we switched. And now we live in the present, to be honest. So we try not to think on the past, but we feel very blessed, having Emi. Again, when he got diagnosed, the doctors told us that he had only eight months and it has almost been two years. So for us, he’s amazing. It’s a miracle he’s with us,” said Andrea.
Emi’s friends and family have known him to be nothing but a high-spirited, joyful little boy, and we were assured, by both him and his parents, that he continues to welcome every day with warmth and happiness. Bringing him the most happiness as of late is his support dog, Frida, whom he loves very much.
We had the best time catching up with Emi, Josue, and Andrea. We wish him the best and cannot wait to see him grow and spread even more happiness to everyone he meets. We love you 10 Emi!
By Keiyara Vanhook
