Fragile but Fierce

Patrice Williams is mother to two boys: Jonah, who was born in 2009 with junctional epidermolysis bullosa, and Gideon. She is married to her sort-of high school sweetheart, Matt. They live in Winston-Salem, North Carolina with their two smelly dogs. Patrice works in communications for a nonprofit child welfare organization. She loves reading, spending time with family, and being outside. Her greatest talents are taking naps and eating tacos. She hopes this column will give hope to those living with epidermolysis bullosa and light to those who love them.

In the spirit of a famous very bad day, some vacations are like that

Have you ever read “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? Here’s a short excerpt: “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard…

Columns

Choosing Between Bad and Worse, I Learned to Become an Advocate

The scariest thing about a rare disease is that nobody has the answers you’re desperately seeking. When you are facing something so unfamiliar and the people who are supposed to know don’t, it’s terrifying. The first couple months of the life of my son…

Columns

My Butterfly Baby

In most cases I don’t agree that “ignorance is bliss.” In general, the more information we have, the better people we are and the wiser our choices. But there are certainly some things I wish I didn’t have firsthand knowledge of. I wish I didn’t know how McDonald’s…