Transcript: How a special needs advisor became a ‘superhero’ to a boy with Tourette syndrome

A single orchestrated note plays softly and builds. A blue-eyed teenaged boy with freckles and a buzz cut opens his eyes as he stands on a rocky hillside.

KIRSTIN: Tommy was born with Tourette syndrome, and his case is exceptionally severe.

He walks down a path lined with dry long grasses, shrubs, and cacti, wearing a t-shirt, jeans, and black and blue sneakers. Low mountains form the horizon. He starts to run as the image gets shaky. Quick clips show him running as a low echo grows louder and breaks into static.

KIRSTIN: His tics were extremely disabling. It was difficult for him to eat and drink, and then you would hear him just cry in frustration. He would just scream, and he'd be so--just frustrated and angry.

Tommy stands looking ahead again as slow notes play.

A middle-aged woman with blue eyes and shoulder-length brown hair sits by a window wearing a purple shirt. A blue banner folds in from the bottom right with white text.

ON SCREEN TEXT:          Kirstin Juhl

Smaller white text is beneath it.

ON SCREEN TEXT:          Tommy’s mother.

The banner folds away.

KIRSTIN: There is a miracle treatment out there, but it was out of our reach due to the cost of it.

Kirstin looks down at a black and white scan of a brain cross-section. Green, blue, red, and black lines outline areas on the right hemisphere near the center line, and a straight, dotted red line moves from near the center of the scan outward.

KIRSTIN: The treatment was deep brain stimulation surgery, which is essentially a pacemaker for the brain.

An x-ray of a head in profile shows a device with wires going to the skull. Dark dots are attached in rows to a long pin.

Kirstin’s hands type on a laptop keyboard. Her eyes widen, and she blinks at the screen.

KIRSTIN: But when I learned that the brain surgery was not covered under our insurance, my stomach just dropped.

Back at the window, Kirsten’s brow is creased as she speaks.

KIRSTIN: I was like, what--what are we going to do? I don't know what to do.

Now in a gray blouse, Kirsten walks through her living room with her hair in a ponytail and a mug in hand, then she holds a cellphone to her ear.

KIRSTIN: But several months prior, I had received a call from the Special Needs Initiative. We had apparently gotten bumped in, per Tommy's diagnoses.

On the phone, Kirstin’s eyebrows knit together as she speaks. Her expression relaxes as she listens.

KIRSTIN: And when I started working with SNI, I kind of said to myself, this is how we're going to figure it out. They will help us.

Now, she wears a patterned shirt as she walks and sits at the table with her laptop.

KIRSTIN: They handled all of the appeals process.

Tommy sits in a room and looks up, his profile outlined by the sun shining through the window.

KIRSTIN: And it was like they were fighting for their own kid.

Now Kirsten’s profile appears in his place as she stands in a different room.

KIRSTIN: And then one day, one of the medical directors said, ‘Give me a call when you have a chance.’

Kirsten holds a cellphone to her ear. She closes her eyes as her face breaks into a smile.

KIRSTIN: And so, I called him up, and he said, ‘It's been approved.’

Tommy jumps into a pool and bubbles surround him underwater, rising slowly toward the surface.

KIRSTIN: So, after the surgery, it was almost imperceptible at first.

The bubbles in the pool clear, and Tommy sits with his eyes closed near the bottom of the pool.

KIRSTIN: And then we noticed gradually, there'd be these periods of time with no tics.

His hands float, and the fabric of his white shirt moves as though in slow motion. Tommy begins to rise.

KIRSTIN: And then it just seemed to kind of start snowballing after that.

Now he laughs above water as he swims and plays with a little girl in a pink swimsuit.

KIRSTIN: His life has changed.

Tommy plays Jenga with his parents and sister.

KIRSTIN: The whole trajectory of his life has been changed.

Kirsten smiles and everyone laughs as the tower of wood blocks topples over.

TOMMY: It's amazing.

Tommy sits in the living room wearing an orange collared shirt.

TOMMY: I can go places. I can do the stuff I want to do with my family.

He and his sister draw outside with chalk. She laughs.

TOMMY: I'm spending a lot more time with them.

He laughs as he plays a car racing videogame with his dad.

TOMMY: And I can control my tics.

He helps his dad barbecue, and the family sits down for a meal.

KIRSTIN: He's just a normal kid now, and it never would have happened without SNI.

The orchestral music crescendos as Tommy smiles.

TOMMY: It feels great to have my life back. Really does.

Now soft piano music plays as he stands outside with a smile, looking around. The picture fades to white.

A blue logo of overlapping U’s appears in the center of the screen. It’s replaced by blue text as the music ends.

ON SCREEN TEXT:          United