Fragile but Fierce — Patrice Williams

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…

You guys. Why didn’t you message and tell me to “hush your face” after my last column? Someone should have said, “Patrice, you, my friend, are an idiot. Why did you say it…

Thanksgiving is my favorite holiday. It’s all the feelings of togetherness and nostalgia without the commercialism and money-spending of Christmas that totally stress me out. I was so looking forward to the day with…

It’s no secret that my 13-year-old son, Jonah, who battles epidermolysis bullosa (EB), has become a huge sports fan. His passion for sports began at age 6, when he could name every car…

Recently, the Carolina Classic Fair came to our hometown. For 10 days, children, teens, and adults in our community enjoyed rickety rides, local crafts, giant produce, pickle pizza (no, that’s…

I write this column as the caregiver and (obviously supercool) mom of Jonah, 13, who has epidermolysis bullosa (EB). But today, I thought I’d let you guys hear from the star himself. He…

My cellphone rang at work last Thursday at 1:21 p.m. It was a call from my son Jonah’s phone. While he was at school. Where he’s not allowed to use his phone. I knew…