Fragile but Fierce — Patrice Williams

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…

Every rare disease family needs a Clair. Jonah has had one since second grade. My friend Lauren is currently praying for one as she and her husband prepare to bring baby Izzy…

Last week was our 19th annual “Cousin Camp” trip to the beach with my husband’s extended family. Thirty people attended, including 15 children ranging in age from 9 to 20 years old. It’s the…

Last week in North Carolina, the feel-like temperature was 105 F. And this week has been in the mid-90s. It’s this hot already, and it’s only mid-June. That’s hot for anyone, but for…

I heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. I know it…

I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome and an…

On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my bonnet, as older folks…

“Dilly Dilly!” Jonah said as he drank yet another virgin strawberry daiquiri. “Do we have these in America?” he asked with pink-tinged lips, looking hopeful. He finished, yanked off his shirt, G-tube shining, and…