Fragile but Fierce

Patrice Williams is mother to two boys: Jonah, who was born in 2009 with junctional epidermolysis bullosa, and Gideon. She is married to her sort-of high school sweetheart, Matt. They live in Winston-Salem, North Carolina with their two smelly dogs. Patrice works in communications for a nonprofit child welfare organization. She 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.

In the spirit of a famous very bad day, some vacations are like that

Have you ever read “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? Here’s a short excerpt: “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard…

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How we’re blessed by Nurse Jessi, and grateful, too

He checks in with her and tells her he misses her when she’s gone. She tries to like sports and ask questions about the subject, just because she knows how much Jonah cares about it. She sends him photos when she’s on vacation. He regularly sends her the dumb…

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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 (…

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Preparing for the future wasn’t high on my priority list — until now

Jonah got his first promotional card from a college last week. We were told that my son, who’s now almost 16, very likely wouldn’t make it to his first birthday, because he was born with epidermolysis bullosa (EB). Now he’s just received an invitation to check out a college.

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My son’s skin has greatly improved during a dupilumab clinical trial

Note: This column describes the experiences of the author’s son with dupilumab. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Jonah, my son with epidermolysis bullosa (EB), and I just made another trip to Chicago right before Christmas. This…

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I’m feeling grateful for a holiday gone right

Holidays and vacations always seem to highlight the little things about epidermolysis bullosa (EB) that make life different. My son Jonah has it much better than many other children with EB. Thankfully, he doesn’t deal with…

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Imagining the horror of Hurricane Helene for those with medical needs

Over the past two weeks, my heart has been incredibly heavy, my eyes full of tears, and my soul full of sorrow as I witnessed the suffering of friends and co-workers in Western North Carolina. The destruction caused by Hurricane Helene is catastrophic. If you’ve never been to the North…

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Hoping for relief by participating in a dupilumab clinical trial

“Mom, I need you upstairs,” Jonah said. “What is it?” I asked. “I just need you,” he responded. “Come right now.” Typically, exchanges like this one don’t happen nearly as much as they used to. As Jonah, my son with epidermolysis bullosa (EB), has gotten older, he’s become more…

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Toggling between having hope and going without it in life with EB

I used to pray every day that God would heal Jonah, my son. I don’t pray for that anymore. It’s not that I don’t think God could do it. I’ve just come to believe that a snap-of-the-fingers miraculous healing won’t be how it happens for Jonah. I might be right…

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I’m grateful that my son with EB is becoming more independent

Independence. It’s a concept we think about a lot this time of year. Together as a nation, we observe Juneteenth and the Fourth of July. And in the “land of the free,” we celebrate summer with beach trips, cookouts, watermelon, pool parties, fireworks, parades, outdoor concerts, and baseball games under…

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Our anniversary trip was an opportunity to rest and recharge

My husband, Matt, and I just returned from six days and nights in the Riviera Maya, Mexico. We stayed at an adults-only, all-inclusive resort and spent most of our time by the crystal-clear beach waters and the beautiful pool. It was just what my soul needed. I love my kids.

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The importance of letting my teenage son with EB be ‘normal’

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 oohs and aahs appropriately over Jonah’s growth. I tell her Jonah is now 5 feet, 2…

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Checking in with my son with EB after his 15th birthday

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 to me for the world to hear his voice, especially as he gets older. Ultimately, I’m…