Enzo Cascardo
Prankster, Leigh Syndrome, Mitochondrial Disease
This interview centers around 17-year-old Enzo, but most of the conversation is led by his mom, Kim. Enzo is nonspeaking. As his primary caregiver and advocate, Kim helps interpret his communication while his personality shines through. Together, we talked about Enzo’s love of making people laugh and what it is like to navigate the world with an incredibly rare disease.
I think it’s worth recognizing the tireless care and advocacy of parents and caregivers like Kim. This isn’t to diminish the stories of disabled people, but to honor the relationships that make so much possible. Disability is often lived through joyful interdependence, and that deserves to be celebrated too.
This Disability Pride Month, let’s celebrate disabled people, the caregivers and allies who walk beside them, and the communities that make belonging possible.
Would you mind sharing about your disability?
Kim: Enzo has a mitochondrial disease, and more specifically, it’s called Leigh Syndrome. Leigh syndrome can present in many different ways. Enzo specifically, is wheelchair bound and has a feeding tube. He lost his speech and a lot of his abilities when he had a stroke, when he was five years old. He was hospitalized for five weeks at that time. He had some stroke damage on the right side of his body, so he was right handed prior, but now he’s left handed. He’s fully cognitive and understands all dirty jokes, bad jokes, everything we’re saying. He’s age appropriate for a 17-year-old, as far as his cognition.
What do you like to do for fun?
Kim: [Talking to Enzo] Minecraft? Meema? His favorite person is his grandma, and he calls her Meema. He loves to play Minecraft and loves eating sweets. He loves playing pranks on people. He likes playing games. He loves telling jokes, hearing jokes, anything for a laugh. He loves to laugh.
He has a box, you open it up and a spider pops out. He’s had the flower you put on your lapel and it squirts water on someone when they go to smell your flower. [Looking at Enzo] You love whoopee cushions, anything to talk about farts. He loves his dog, Buddy. Buddy is some of your greatest entertainment.
What motivates or inspires you?
Kim: Enzo, do you have an answer for that? What motivates you? Do you know what that means? What gives you a feeling of purpose? You like messing with people. Making people laugh as a motivator. I do think he has something just in his soul that is motivating. Every obstacle he’s faced, he’s come through with flying colors, because things for his situation are quite grim. So, yeah, really just something in his soul, ya know?
What change would you like to see for disabled people in the future?
Kim: What change, Enzo? Let me think here. Well, definitely, more awareness. Like even dealing with parking spots for an accessible van is frustrating because people are completely unaware. You know bumper stickers that say, “Watch out for motorcycles?” I want to have one on my trunk that says, “Watch out for wheelchairs and cars of people in wheelchairs.” We are constantly facing obstacles when it comes to parking our van.
I also think a lot about rare diseases. I think there are more diseases we don’t know about, than we do know about. My dream would be to see research done, because things that are rare don’t get researched. Like Enzo doesn’t have a true diagnosis, because his condition is so rare. They do give him the diagnosis code for Leigh Syndrome and mitochondrial disease because he presents that way. In reality, he doesn’t have true Leigh Syndrome. To have true Leigh Syndrome you have to have two copies of a particular gene; Enzo only has one copy of this specific gene. Because he only has one copy, he doesn’t qualify for a lot of things. If there’s a trial for his disease, he can’t participate because he doesn’t have a true, full diagnosis of Leigh Syndrome.