When I was diagnosed with Gorlin Syndrome, I was just a kid. I didn’t know what to think. I knew it wasn’t cancer or a big-time sickness. All I knew was I had “it”. For a pretty long time, I was scared. I had never heard of BCCNS, so I didn’t know what it could do to me. What would people think of me having it? Would my friends still want to be my friends and play with me? What would happen to me?
All of these thoughts were going through my mind. My mom had been working overtime finding as much information as she could. One day, she found something that changed our lives, a link to the BCCNS Life Support Network.
It didn’t take long for us to fit in with the group. It didn’t matter if we were at a boxing match or just sharing stories at a restaurant, I felt like I belonged. It’s a feeling you get when you’re with your family. You don’t feel judged; you feel like you can be yourself. That’s what BCCNS is; it’s our bloodline. We’re a family. It doesn’t matter if you’re in America, Canada, or Mexico, if you have BCCNS, then you’re family.
The Network is what brings us together. It’s our link to each other. If you need support, you can count on them to be there. I know I couldn’t have made it without their help. They have provided us places to stay, doctor referrals, lots of information and fun.
So if you ask, “what the BCCNS Life Support Network means to me?” I would tell you it means — family!