Fragile but Fierce — Patrice Williams

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…

“Does he deal with depression?” my dad asked me the other day. I was explaining to him that Jonah, my 14-year-old son with epidermolysis bullosa (EB), had endured a rough couple of…

My son Jonah turned 14 at the end of last month. To celebrate, he invited 10 (!) kids over to our house to hang out. They played basketball, darts, and pingpong and rode our…

“Next we come to someone I have watched since he was very little,” she said, her voice beginning to break, “go from not being sure if he wanted to play dodgeball to coming into…

I went to get my first massage last week. Well, sort of my first. When Jonah, my son with epidermolysis bullosa (EB), was an infant and we were mostly homebound, a dear friend…