A Q&A with my son about life and EB ahead of his 17th birthday

A columnist continues her tradition of interviewing her son Jonah

Written by Patrice Williams | February 12, 2026

Every couple of years, I interview my son Jonah, who was born with junctional epidermolysis bullosa (EB). After all, it’s his life I’m writing about, so it’s good to get his perspective. Excerpts of our conversation, lightly edited for clarity and style, follow.

PW: You’re about to turn 17. How does that make you feel?

JW: Good! I’m excited to be preparing for college and learning what I want to do with my life. I’m ready to get to the next step after high school.

What’s one way EB has shaped your personality for better or worse?

I think it’s shaped me for the better. It’s taught me to be more mentally tough. Because of the stuff I’ve had to deal with, I’m able to mentally overcome more [challenges in life].

My Butterfly Baby

What’s the most annoying but well-meaning question people ask you?

I don’t really have a problem when people ask, “What’s wrong with you?” or “What happened to your face?’’ I think my problem is when people make assumptions, if they ask if I was in a fire or in a car accident. I don’t like the assumption part. I don’t have a problem explaining, I just don’t want people to assume.

What’s something you wish people understood about EB without you having to explain it?

I wish friends, and people in general, would understand that it’s hard for me to be spontaneous, to just be able to do things like go to the pool or whatever, without it being planned ahead of time. I wish they understood that my life is pretty scheduled because of wound care and dressing changes. I want to be able to do things, but I need notice ahead of time.

What’s something EB has taught you that you think most people your age haven’t had to learn yet?

That life isn’t fair. I didn’t ask to have EB, but here I am. You have to take what life gives you and try to make the best of it.

How do you feel about the dupilumab clinical trial that I’ve previously written about? How has it changed things for you?

Dressing changes are easier now. Most of the time, I can go without my arms bandaged. Overall, it means less discomfort.

What do you think people your age worry about the most? Do you think that’s true for you or not?

I would probably say school, especially with college coming up, such as having to worry about good grades and getting into college. It’s definitely true for me, but I have some extra worries with medical stuff and figuring out what living at college is going to look like for me.

What does a good life mean to you at this age?

Being able to feel safe and comfortable in your own home with your family. Having a few close friends. Having fun doing the things you enjoy.

What’s something you hope people remember about you?

I just want to be known as a good person, somebody who was nice to people.

What’s something you are looking forward to in the upcoming year?

My senior year of high school and all the fun stuff that will come with that.

OK, now for the fun ones. What’s one piece of advice you’d give your younger self?

I know your first Wake Forest basketball game didn’t go so great. But try again. They’re going to be your favorite thing.

What’s something adults think is a big deal that really isn’t?

What other people think about them.

What’s something people would be surprised to know about you?

Even though I can’t play sports, I know more about sports than most people. I can talk about most big teams, players, and sports news, even if they’re not “my” teams.

What’s your best dad joke?

I like the one from “The Waterboy“:

Q: Why are alligators so ornery?
A: Because they got all them teeth and no toothbrush.

If you could instantly master one thing, no practice required, what would it be?

I’d like to be really good at basketball (and play without blistering my fingers).

Now for a little “This or That.” Say the first answer that comes to mind.

Mom or Dad? Muggsy 🐶
Late nights or early mornings? Late nights 🌙
Movies or TV series? TV series 📺
Sweet or salty? Salty🍿
Staying in or going out? Staying in 🛋️
Being the funny one or the quiet observer? The funny one 😂
Planning ahead or going with the flow? Planning ahead 🗂️
Pizza or burgers? Pizza 🍕
Ice cream or cookies? Cookies 🍪
Instagram or TikTok? Instagram 📱
Group chats or one-on-one hangs? One-on-ones 𓀤𓀥
Duke or Carolina? Ew. 🏀

A two-photo collage; in the left photo, a teenage boy in a red and white stocking cap holds a medium-sized dog in his arms outside on a sunny, winter day with snow on the ground; in the right photo, a tiny dog's head is seen through a boy's legs, which are wrapped in bandages.

Jonah Williams and his dog, Muggsy. (Courtesy of Patrice Williams)

This column is titled “Fragile but Fierce.” What does “fierce” mean to you?

Having courage, being brave, and dealing with whatever life throws at you.

Well, you’re the bravest guy I know.

Thanks, Mom. You’re pretty brave yourself.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.

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About the Author

Patrice Williams 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.