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How much would a parent risk to help a sick child? It's something none of us can know until something happens. NPR's Michael May has the story of a father who had a decision to make when he realized he'd passed on a disorder to his son.
MICHAEL MAY, BYLINE: Carl Luepker was 10 years old when he first noticed his right hand twitching slightly when he played piano. It was like it had a mind of its own. Doctors diagnosed him at 12 with a degenerative nerve disorder called dystonia. It causes nerves in the brain to misfire, leading to uncontrolled muscle spasms. They get worse over time.
When I met Carl in college in 1991, his hand spasms had gotten bad enough that he couldn't play piano at all. But he kept it pretty well-hidden. He's the kind of guy who let a mock rock band called Cheshire Cat. I remember his wide grin, wild red hair. He always had people laughing. Here he is speaking at his wedding at age 30.
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CARL LUEPKER: Providing comfort with comfort support.
MAY: The dystonia kept spreading. And eventually, it started to affect his speech.
C. LUEPKER: Yeah, I started to sound more and more like Chewbacca.
MAY: Carl can joke about it, but it's been very painful. He's not the extrovert and life of the party that he once was. He tries to speak, and his mouth and jaws clench and spasm. Still, Carl has powered through life. He became a sixth-grade schoolteacher. He found ways to adapt, like using an interactive whiteboard to communicate with his students.
C. LUEPKER: I never wanted to be considered disabled.
MAY: He never wanted to be considered disabled.
After he was married, Carl was getting a physical. And he contemplated getting a blood test to find out the cause of his dystonia. He and his wife Heather wanted kids. If Carl's dystonia was genetic, he could pass it on to their daughter or son.
C. LUEPKER: Heather turned to me and said - whatever he has, we're going to love him just the same.
MAY: Carl had never let dystonia run his life, and he wasn't about to start. So they never got that gene test. They had two children, Liam and Lucia. They both sport a shock of red hair, just like their dad. Carl watched his kids grow. His daughter runs cross-country. His son loves to draw. Carl didn't worry that much about dystonia until his kids reached around 10 years old. That's when Carl developed dystonia.
C. LUEPKER: I've always looked for it in my kids. I worked for signs. It was my worst fear.
MAY: He never noticed anything with Lucia. But when Liam was 10 years old, Carl noticed his hand cramping during violin lessons. Then he tripped going up the stairs. Carl was sure he saw his foot twitch under him. It was a small thing. Most parents wouldn't have noticed. But Carl, he immediately took Liam to a neurologist.
C. LUEPKER: I had to intervene during his examination and just say - doctor, let's have him walk on his toes. And he couldn't.
LIAM LUEPKER: I kind of knew what was going to happen, but it still shocked me.
MAY: Liam remembers the day he was told he had dystonia.
LIAM: I was just overcome with - not fear but anxiety. I had so many questions. Like, what would happen to my kids? What are the chances of it becoming worse? All these thoughts into my mind poured the instant the doctor said what he said.
MAY: At this point, it's just affecting Liam's left foot and his hand. But it's an insidious disorder. Since Liam's dystonia started in his foot, it's very possible he could end up unable to walk.
C. LUEPKER: It hit me hard. And did I feel shame that he inherited this? Of course.
MAY: Up to this point, Carl had been trying to live a normal life and just ignore the dystonia as much as possible. But now Liam's dystonia has become the center of his life. He quit his job, went on disability. He focuses on Liam full time.
Parents can have a tough time relating to their kids' struggles. But in this case, Carl truly understands what Liam is going through. For example, Liam's been singled out at school for having a weird walk. Carl knows it bugs him, so they talk it out.
LIAM: I want them to know that I want them to still treat me like they treated me before.
C. LUEPKER: You feel like people treat you differently?
LIAM: Only if they know what it is. If they know what it is, they feel more empathetic, which, surprisingly, does not make me happier because I wanted to be treated like a normal kid.
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MAY: But it's not all hard conversations. They play a lot of pingpong - a lot. And they're both good players, completely fluid. Liam's winning this round.
C. LUEPKER: No.
MAY: Carl has discovered that dystonia doesn't affect his reflexes, just one of the things he's able to pass on to Liam.
LIAM: I've watched my dad, and one thing that he taught me is to adjust to new conditions. It's like finding new ways to get around obstacles.
MAY: Carl's doing all this for Liam, but he's also doing it for himself. He's working to find a productive way to channel the guilt he feels. He doesn't want Liam to absorb his sadness. But it doesn't always work. During one of their recent conversations, Liam picked up on it.
C. LUEPKER: You sensed I was sad or I was heavy. And you just said - out of the blue - it's not your fault. And it helped me believe that in that moment that that was true.
MAY: And of course, Liam doesn't blame his dad for his dystonia.
LIAM: I realized it wasn't your fault because it passed down much further than you.
MAY: It's bittersweet to be sure. But this tragic situation has had a powerful impact on their relationship.
LIAM: More connection - we're connected through bonds of pain, I guess. We understand each other more than anyone else does.
MAY: Carl's done a remarkable job preparing Liam for life with dystonia. But there's only so much he can do. Liam's pain is getting worse. It's darkened his mood.
So now Carl has begun to consider a risky intervention, a treatment that can stop - even reverse - the symptoms of dystonia. It's called deep brain stimulation. Doctors implant electrodes deep into the brain to calm the neurons that are misfiring. The electrodes stay there forever, like a pacemaker for the brain.
Carl plans to do the surgery first. He can't ask Liam to do something this scary without experiencing it himself.
C. LUEPKER: I have no choice. I have to get this surgery done.
MAY: Carl wants to give Liam courage. He believes this surgery is the best hope that Liam could live a normal life.
Michael May, NPR News.
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