Yesterday, I had the opportunity to talk with Rosemary Lora and Gabriel Villamil over dinner, who, like me, lost their child to DIPG. I first heard about their son Javier, who they used to call Buji, after Buji’s aunt Fulvia Gonzalez heard about me on the Yahoo DIPG Group and decided to reach out. Fulvia contacted me because the family lives nearby in New Jersey and the DIPG community is so small that it’s comforting when you get to meet other parents who have gone through this, especially when they are so close by. Buji had died on January 4, 2010, about eight months after he was diagnosed, and at the time his parents weren’t ready to talk about their loss. They were really taking it hard. I told them they could call me whenever they were ready, and I finally got to meet them at the second gala. Fulvia bought a few tickets, which was amazing support for the foundation. We kept in touch and after I came back from the symposium in Cincinnati, I felt in my heart I wanted to call them. I wanted to embrace them and when we met for dinner, we really bonded. They came to really open up to me and we exchanged stories about our children over dinner. We cried and it was a very emotional night, but we all had a great time. I am so glad I met them, and I’ve asked Fulvia to be part of the Cristian Rivera Foundation Committee. I know she’ll make a great addition to our cause.
John “Gungie” Rivera
Forever Cristian’s Daddy