Fragile but Fierce — Patrice Williams

Earlier this week, my son Jonah and I had a visit with his pain doctor, Dr. Savi. She is the coolest, even in the eyes of the ultimate coolness judge, a 15-year-old boy. She…

Every couple of years, I like to interview Jonah, my son with epidermolysis bullosa (EB), for this column. You can read past conversations here, here, and here. It’s important…

We’ve always been the family that gets stares. Jonah, our son with epidermolysis bullosa (EB), with his wounds and bandages, always earns us looks from strangers. Even if the skin on Jonah’s face…

Jack’s first memory of Jonah, my son with epidermolysis bullosa (EB), was at Jonah’s first birthday bash in 2010. It was a party to rival all parties, complete with carnival games, a petting…

At a men’s basketball game last week at Wake Forest University, my son Jonah, who was born with epidermolysis bullosa (EB), stood at center court during a first-half timeout. As a crowd of…

My therapist says I have “high-functioning” anxiety. This is not news to me. I’m thankful to have confirmation of what I’ve known for decades. In childhood, my high-functioning anxiety stemmed from doing…

I went to a baby’s funeral last week. I have been to too many babies’ funerals. Counting last week’s, I’ve been to six in the past 15 years, beginning with my own son’s after…

When our son Jonah, who was born with epidermolysis bullosa (EB), was 3 years old, our requests for educational support and therapeutic services were denied for a second time by our school district.

I’m 41 and a half years old, and I started therapy for the first time two weeks ago — real, consistent counseling that I plan to continue indefinitely. After our first son, Gabe,…

I get so tired of thinking about epidermolysis bullosa (EB). Even as I sit down to write this column, I’m wondering, “What’s left to say?” My son Jonah was born with the condition,…

Jonah, my son with epidermolysis bullosa, graduated from eighth grade two weeks ago, when he walked across the stage of the amazing school he’s called home for the past nine years.

“Mom,” my son Jonah, who has epidermolysis bullosa (EB), texted me a couple of weeks ago. “I just accidentally poked myself in the eye.” He’d just completed one of four straight days of…