Interview With the Butterfly, Part 2

Last in a series. Read part one. 

I continued an interview this week with my son Jonah, who is 11 and was born with junctional epidermolysis bullosa (EB), after we both got a bit long-winded the last time we sat down to chat.

Today, I could tell he struggled a bit more with his answers. Last time, we dealt a lot with what he goes through on a daily basis, and his current hardships and victories. Today, we talked more about the future, and that was tougher for him.

While we’ve all learned that there is some benefit to taking one day at a time, I don’t ever want him to be afraid to dream.

PW: What do you want to be when you grow up?

JW: Hmm, I don’t know for sure. I kind of want to do something in baseball or NASCAR. I’ve thought about being a sports broadcaster or helping out with the teams somehow. I know I can’t play professional sports, but I still want to be involved in the sports world. 

What are your hopes for the future?

Something I most hope for is a cure for EB. Sometimes it’s hard to hope for that. I’d like to be able to take care of my own wounds and take care of myself. Unfortunately, right now, I can’t do that.

I’d like to have a family and a good job. When you asked me on the first day of school for our sign, what I wanted to be when I grew up, I said, “a decent human.” I want to treat people kindly. 

How have you seen people’s kindness and love because of your EB?

We had friends pay for us to go to Disneyland. Our church has helped with a ton of things. They finished our basement so we’d have a place to do bandages. They helped get me a special Microsilk tub. And a lot of people have been praying for me over the years. That has helped a bunch. 

What special experiences have you had that you probably wouldn’t have had without EB?

I’ve gotten to meet a bunch of cool, famous people. I’ve met a bunch of NASCAR drivers including Joey Logano, Clint Bowyer, and Kurt Busch. I’ve met [NFL tight end] Kyle Rudolph. And I got to do my Make-A-Wish trip to meet Jay Leno and to see all of his awesome cars. And we went to Universal Studios.

Joey Logano had me at the track for a day as a JL Kids Crew member. I hung out with the team, toured the garage, got a ride in a pace car, got to introduce him, and had a suite to watch the race. I also got to go to the Xfinity banquet one year to celebrate the Joey Logano Foundation winning a community service award. We were also on the TV show “The Doctors” to talk about EB, and they sent us to visit the Petersen Automotive Museum.

Jonah and his brother, Gideon, at the race track with Joey Logano. (Courtesy of Patrice Williams)

Jonah with NASCAR driver Clint Bowyer and his son, Cash. (Courtesy of Patrice Williams)

What would you like people to pray for specifically?

I’d like for people to pray that doctors will find something that could help make EB better. And I’d also like to be able to do more things. I can’t do a lot. I can’t really play sports. Sometimes it’s too hot for me to go outside, and today I can’t go outside because I have blisters on the bottom of both feet. I just wish I could do more stuff, you know?

What do you like to do for fun?

I like to play baseball and video games. I have a PlayStation 4, and my favorites are MLB: The Show and NASCAR Heat. We go to a local park to play family baseball games. My little brother, Gideon, and I like to make funny videos on TikTok. I also like to drive my go-kart.

What is your favorite …

Season?

Fall. Because it finally cools off.

Movie?

I like a bunch of baseball movies and “Nacho Libre.”

Hobby?

Playing and watching baseball.

Baseball player?

Freddie Freeman for the Atlanta Braves.

Food?

That chicken chili you make. And pizza. And wings.

Dessert?

A chocolate chunk Pizookie from BJ’s.

Vacation?

Going to the beach every summer for “Cousin Camp.” Sixteen cousins come!

Who is your favorite parent? 

Uhh, I love you guys both the same.

Good answer.

Jonah on his annual beach vacation to “Cousin Camp.” (Courtesy of Patrice Williams)

I want to give so many thanks to my sweet Jonah for being strong and unafraid to be vulnerable. He puts on a brave face, but deals with so much on a daily basis. It is a hard life. It is a weird version of normal. Some days are really great, while others really stink. Regardless, I sure am thankful we have each other.

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Note: Epidermolysis Bullosa Today 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 Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.