How a 12-year-old boy battled a rare disorder

Hoda Kotb Correspondent • Profile

DALLAS, TEXAS - There’s a little of an adult and a kid in Sam Gladen. Some say he’s one of a kind, precocious and creative.

Kent Gladen, father: He gets people’s attention and then he just starts feeding on it..

Debbie Gladen, mother: We’re always going, "Okay, now, Sam. Is this true or is this some elaborate fairy tale?"

But Sam says he’s just a kid—a Boy Scout who likes hiking, sailing, and playing football with his friends. But all of that changed drastically.

Sam Gladen's video diary: To anybody that’s watching this and doesn’t know what it’s like to have your childhood ripped away, it hurts.

Getting that childhood back would take Sam on a long, frustrating medical trail. And at the end, Sam would have to call on the adult in him, to face a very grown up and terrifying decision.

It began gradually in early 2007. Sam couldn’t figure out why he was limping or why his ankle was giving out on him.

Sam: I couldn’t stand flat or anything. My foot just kept, like, hitting loose gravel when there was no loose gravel.

But he didn’t tell anybody.

Debbie: He doesn’t complain. He buries a lot of things.

And when Sam’s parents Debbie and Kent Gladen finally noticed something, they didn’t think much of it.

Kent: He just was limping. You know? Kids limp for a billion reasons.

Video   Sam's advice In this video diary, Sam Gladen gives advice to kids with dystonia and other medical problems. Full video of the Sam's story will be posted Monday. Dateline NBC

They were more annoyed than concerned, they say, thinking Sam was being Sam— just goofing around. Sam's parents' attention was focused elsewhere. Debbie had learned that her mother was terminally ill.

Hoda Kotb, correspondent: During that time, did you ever reach out and say, “Hey, Mom, hey Dad, something’s funky” ?

Sam Gladen, 12 years old: My mom had enough going on with my Nana and that would be another medical problem in her life and she really didn’t need that.

But Debbie’s mother, in a prescient, cautioned her about her son.

Debbie: She looked at me and said "You need to take this serious. He is not goofing around with you. There’s something wrong." And that was the last conversation I had with her.

Her funeral was March 29, 2007.

Sam: I couldn’t even get out of the car, ‘cause like, my leg just wouldn’t work.

Kent: I was furious.

His parents thought Sam was acting out because of his grief. He’d been so close to his grandmother.

Debbie: At that point, it was easier just to say, “Okay. Fine. Sit in the car.”

Kent: Not one of my better moments in life.

Debbie: Not something we’re proud of.

Kent: But I was furious.

Video   Being teased Sam Gladen remembers being teased about his crutches and brace. Dateline NBC

Kotb: Did you miss the funeral?

Sam: I just missed them burying her. I made the limp out to the memorial service, and then I had to limp back to the car.

Kotb: How much pain were you in at that point?

Sam: Immense. It was almost unbearable.

Kotb: How would you describe it? How much did it hurt?

Sam: Go lay down in front of a train and you’ll figure it out.

In the weeks following the funeral, Sam needed crutches more and more. And it was now clear that there was something seriously wrong with his foot.

Kent: His foot’s now turning in, and his toes are curled up like he’d had a stroke.

Frantic now, his parents took him from doctor to doctor. A pediatrician, a podiatrist, and two orthopedic surgeons. Each said something different: It was Sam’s heel, his foot, his knee. Finally, they say, one of the orthopedic surgeons determined that it was all in Sam’s head—that he was still grieving over the loss of his grandmother.

Debbie: There was probably a shred of us that—that said, “Okay, maybe it is. Maybe our kid is crazy.” And that’s probably our biggest regret.

They had Sam in grief counseling, tried physical therapy, even massage therapy. Nothing helped.

And Sam was angry with just about everybody he knew the problem with his foot wasn’t all in his head.

Kotb: How ticked off were you?

Sam: Pretty ticked.

Kotb: How did you take out your anger?

Sam: At first, I chewed my lips to shreds. Then, I went to the brows.

Debbie: He was rubbing his eyebrows off with a pencil eraser

Kent: And he literally had no eyebrows.

And Sam was checking out of his life.

Myles, younger brother: He wasn’t as fun, he became mellow.

It scared his 9 year old brother Myles.

Myles: He’s always been the up and moving and want to meet everyone type of guy and it kind of was creepy because he wasn’t like that anymore.

The Gladens had to do something. They took Sam back to the doctor and demanded an MRI. This time, doctors got it right.

Sam’s problem was in fact in his head—but it was neurological—not psychological. Sam was diagnosed with a little known disease called dystonia.

Sam: I was like, “Not good,” that’s all that was going through my mind. I was like, “Oh, crap.”

Dystonia is a rare neurological disorder in which the brain sends incorrect signals to the muscles causing them to contract or spasm involuntarily.

In Sam’s case it was affecting the muscles in his foot. There is no cure, only treatment.

Kotb: So now you know what you have, did you talk to your parents like, “What are we gonna do?”

Sam: No, I didn’t really talk to them at that point. I was peeved at doctors and at my parents for not believing me that I did have something wrong.

Debbie: We sat him down and we apologized and we said, “You know, we are so sorry that we didn’t know. Because we hurt him so badly by not believing him.”

Kent: Not believing what he was saying to us.

Now it was online searches, and phone calls to find treatment for Sam. In November 2007, they were referred to Cook Children’s Medical Center in Ft. Worth and a neurologist, Dr. Fernando Acosta Jr., who told them just what they wanted to hear.

Dr. Acosta: I said, Give me a chance. Let me try and see if I can straighten it out. I think I can.

Dr. Acosta wanted to inject botox into Sam’s leg. Another doctor had already tried this but it didn’t work. What’s more, it hurt... really hurt.

Kent: Sam laid on his stomach, and I literally had to lay on top of him to hold him down to keep his legs still ‘cause it burned. It hurt so bad as he’s screaming, at the top of his lungs.

But this time the pain paid off. Dr. Acosta straightened out Sam’s foot enough to fit into a brace. That and physical therapy at least had Sam off crutches and back on his feet. But it was still an ordeal, as Sam described in his video diary.

Sam's video diary: This is my brace. It’s very stiff and hard to walk around in. And it hurts a lot.

It was just a temporary fix. Dr. Acosta expected the disease to spread, and the shots would no longer help. His estimate was, within 5 to 10 years Sam’s entire body would be twisted. Sam would be in his 20s facing life in a wheelchair.

Dr. Acosta says he wanted to intervene as soon as possible to prevent that.

So in early 2008, he proposed a different and frightening treatment—one that might have Sam walking without a brace, and stop the progression of the disease.

Dr. Acosta: It involves brain surgery. It’s called deep brain stimulation.

Debbie: I went “no way,” “not on my child.” This is my smart, articulate, creative child. And you’re not gonna mess with his brain.

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