A Mother's Journey

Hi! I'm Silvia

I am the mother of 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He died in late 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more. I hope my life and my struggles through grief and special need parenting inspire you to enjoy each moment.

Blog · February 19, 2015

Ask Nicky (and Connor!) video!

Hello everyone!

Here’s video #2 (Video #1 is here) of our series “Ask Nicky”. My son Nicky was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He is 18 now. In this video his brother Connor (11 years old, EB free) is here as well answering questions. If you have any questions for Nicky about his life with EB please leave a comment below. Don’t assume what his life may be like, just ask! We love questions!