Going to the Debra.org PCC is always a treat. The first Conference I attended with Nicky was the one held in Los Angeles in 1999. It seems like forever ago. Nicky was 2.5 years old and by then I had many “online” friends which I had the absolute pleasure to meet in person. Back then, without Facebook or even MySpace, the only way to find someone who was dealing with the same rare disorder was through mailing lists or message boards. That seems so antiquated right now! Still… those first parents that I met remain in my close circle of friends who I love because we “get” each other as we’ve been through this roller coaster together all these years. The following Conference I attended was the one in Palo Alto (CA) in 2004, followed by the one in 2012 in Orlando (FL). They have conferences every 2 years, whyRead More →

Imagine… for a moment, being so thrilled about finally having that baby you longed for so long. This is 21 months after the unimaginable happened, when you had to bury your first baby, being told, in a little room in a hospital, that your second newborn would most likely not reach his first birthday. Imagine being told that there is no cure, no treatment, all you have to do is instantly be transformed into a nurse, insurance not paying for the expensive bandages needed to care for this child, and all you can do is wait for the inevitable to happen with no hope. That was me on November 26th, 1996, the day after my son Nicky was born. Those words still echo in my psyche: ‘No cure, no treatment’. As a matter of fact, there was nothing happening anywhere in the world to even attempt at curing EB atRead More →