Fragile but Fierce – a Column by Patrice Williams

Patrice is mother to two boys: 8-year-old Gideon and 11-year-old Jonah, who was diagnosed at birth, in 2009, with junctional epidermolysis bullosa. She is married to her sort-of high school sweetheart, Matt. They live in North Carolina with their two smelly dogs. Patrice 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.

What does home mean to my son with EB?

I spent the last two hours at work the other day reading song lyrics, poetry, and quotes. Along with my communications team, I was attempting to brainstorm a name and tagline for the new adoption program we’re launching at our child welfare agency. I’ve also been using Google to search…

A new driver that we once weren’t sure to expect

It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn. Jonah, who was born with junctional epidermolysis bullosa (…