A Mother Interviews Her Son, Who’s Living With Epidermolysis Bullosa

Jonah, 13, on Earth science, the Atlanta Braves, and the chicken crossing the road

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by Patrice Williams |

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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 did me the honor of answering a few of my questions.

PW: This is a serious question. You ready? You’ve been given an elephant. You can’t give it away or sell it. What would you do with him?

JW: Dude, I would totally turn him into an emotional support animal and take him with me wherever I went. He’d come to school with me, too. I’d name him Spider Elephant or Mike Tyson.

If you won a million dollars in fantasy football — as your dad says he’s going to do literally every week — what would you do with it? And you can’t just say that you’d cure EB. Because, duh. And also, that’s boring.

I’d probably help y’all pay the bills. I’d get some stuff for myself, like some clothes and sports stuff. I’d give back to the community. I’d just walk up to people and say, “Hey, you want $1,000?” I’d challenge people at the store, “Here’s a thousand dollars. You have 15 minutes to spend it.” Also, how much does a capybara cost?

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living with epidermolysis bullosa | Epidermolysis Bullosa News | photo of the face and torso of Jonah and Patrice, cheek to cheek. Both are in blue shirts, though Jonah's has a baseball logo on his.

Jonah and Patrice at home. (Photo by Patrice Williams)

What isn’t a subject in school but should be? Why?

Sports statistics! I’d use it to get better at fantasy sports, so I could dominate my friends in all our leagues.

What subject could you do without?

Earth science, goodness. When I go into a job in sports, I don’t need to know whether granite is an igneous rock or not. (Note: I just Googled that, and he’s correct that granite is an igneous rock, so he’s definitely at a higher scientific level than I am.)

What would your dream field trip be, and why? What would you do there?

(With zero hesitation) Braves game. Why? Because it’s like my favorite thing ever. We’d watch the game, and I’d definitely meet [pitcher] Spencer Strider. He would give me advice on how to grow a sexy mustache. Throwing out the first pitch would be cool, with 40,000 fans watching me. I’d also want to do a bunch of fielding drills with third base coach Ron Washington.

Who is someone you look up to (besides me, obviously) and why?

Besides you? I’d say Dad. He’s taught me so much about sports and life in general. He’s taught me how to be his little dude sidekick.

What’s something you wish adults understood about kids today?

Adults sometimes put too much pressure on kids. They don’t realize we’re already under pressure at school or sports or whatever. And so it can be overwhelming. Sometimes you just want to take a nap, you know? (Note: No, I have no clue. Whatever could you possibly mean? Eye roll.)

What’s something you wish Dad and I understood about you, specifically?

How I feel when it’s been a long dressing change and then homework, dinner, and bedtime. You don’t get your self-time that you need, you know?

Another super serious one. You ready? What is your theory as to why the chicken did, in fact, cross the road?

It’s all a conspiracy. Where is the proof that the chicken actually did cross the road? How busy is the road? How many cars are there? What year is it? The whole chicken society has really gone downhill, so they probably didn’t even try to cross in the first place.

living with epidermolysis bullosa | Epidermolysis Bullosa News | photo of Jonah getting a kiss of the cheek from his mom. Both are wearing blue shirts. Jonah's arm is bandaged.

Patrice gives Jonah a kiss at home. (Photo by Patrice Williams)

Where would you like to live when you’re older?

Maybe in the Atlanta area, so I could go to a Braves game sometimes. (Note: Jonah lives in North Carolina.) It’s definitely a sports city with MLB, NFL, and NBA teams. If not there, maybe Charlotte [North Carolina]. I think it has a cool atmosphere. And they have the Panthers and the Hornets. I like the big-city atmosphere. As long as the big city doesn’t smell bad.

What is the most challenging thing in your life right now?

I mean, it’s a combination. School’s a lot right now. Plus the EB stuff, having time for dressing change. It takes up my whole afternoon. When I have a lot of tests to study for and homework, I don’t even get to start schoolwork till after 7 p.m. It’s exhausting.

What is the best thing in your life right now?

I have a lot of good friends. I have a tight friend group, which is really important. One of my favorite things to do is to help out with my school’s soccer and basketball teams. It’s my favorite thing about school.

Well, that was super fun. Now please excuse me while I go look up the cost of a capybara.

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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