By RACHEL SAUER
The Palm Beach Post
Small boy in a swimming pool, glimmering like a minnow as he torpedoes through the turquoise water. Darting through a forest of legs, holding his breath, a compact submarine in royal blue swimming trunks.
Coming up for air, face tilted toward the water’s surface, brown eyes open, grinning. He pushes off the rough pool bottom with both feet, accelerating, shooting toward the sun. Faster, faster, faster aaaaannnnddd … Ha! A sleek little dolphin! A baby whale!
“Christopher!”
He darts away, cackling, to the other side of the pool, grabbing the edge with both hands, hauling himself out of the water. Heave, ho and push, first one knee, then the other, and he’s standing. No, he’s running, toward his mom, toward the food.
She makes a grab for him, but he knows that grab, that grab-and-kisskisskiss. He dodges, snatching some Doritos, still laughing. Then he slows. Maybe it’s on purpose. His mom catches him, wraps him tight in her arms and kisses the top of his head. “I love you! I love you!”
“Mom!” he protests, wiggling away, running.
She watches him go. That imperfect gait, halting and swaying, feet turned in. But he’s running, so does it matter? It is perfect to her. He is 9 today, her Chris, her shameless tease, her little man.
Last year, she says. Last year was so different, when he turned 8, when he couldn’t walk, when he couldn’t eat without her help, when she pushed him in a wheelchair around his birthday party. This year…
Well, just look at him.
A MOM NAMED VIVIANA
Look at Chris Lizama today, right now, this dervish on a bicycle, riding around and around the West Palm Beach cul-de-sac where he lives with his mother and grandparents. Today, this very minute, he is a 9-year-old boy — just that, a wiggly, silly, sweet 9-year-old boy who loves animals and video games and Adam Sandler movies, and has a certain girl’s number programmed into his phone.
He also has dystonia, a rare, chronic neurological condition that causes muscle twists and contortions. In September, he couldn’t walk, or feed himself, or brush his own teeth, he was so contorted. He was a plus-sized personality in a skinny, twisted body.
In September and October, he had surgery to stimulate the deepest parts of his brain. Now he has two thin wires specifically placed in his brain, wires that thread under his scalp, behind his ears, down his neck and connect to two pacemaker-like batteries visible under the skin of his chest. The charged wires help his brain send the proper commands to his muscles.
So today, he is a boy who can walk. He cannot worry whether he’ll walk tomorrow.
He is a boy with a mother named Viviana.
Viviana Valdez-Lizama, all 5-feet-1, 100 pounds of her. Perth Amboy native, susceptible to any Victoria’s Secret sale, devout Catholic, unfailingly generous, unabashed fan of Us magazine. Only 30. Ask her, “Where are you going in those 4-inch heels, Viviana?” and she might answer, “The beach!” Of course.
When extremely provoked, she gives The Finger. Not that finger, but the index finger of her right hand, stiff and straight, waving to punctuate every “Oh, no, you di-uhn!” She employs it when her son is being naughty, or when somebody’s standing in his way.
Viviana and Chris, Chris and Viviana. She remembers everything: conceiving him soon after her wedding to his father, Juan Lizama. The easy pregnancy, the fast delivery. March 3, 1998, in Miami, she tumbled into love with a wrinkly, fuzzy baby, her Christopher Austin.
Her marriage ended before Chris was 1, and Chris’ father has had little contact with him since then (Chris’ father did not respond to requests for comment). Viviana couldn’t regret the marriage, though, because she had her son.
And Chris was healthy and happy — a comet gaining momentum. “He potty-trained himself when he wasn’t even 2 yet,” she remembers. His speech was slightly delayed, but he caught up. His only medical emergency was a lens transplant after a rooster pecked him in the left eye.
So much energy, this boy! First tae kwon do, then baseball. He wasn’t the fastest runner, Viviana says, but he could hit that ball. And he loved it.
It was natural that he would get sick sometimes, but the hand cramps in early December 2004 were strange. “I thought maybe he sprained it,” Viviana recalls, “so I said we’d give it a day or two.”
His right hand got worse, though, so Viviana’s mother, Catalina Valdez, took Chris to the doctor. An X-ray showed nothing wrong. His hand curled into a fist and wouldn’t straighten. Maybe rheumatoid arthritis? Tests came back negative.
Within weeks, his right hand was a tight fist and his left hand was curling in. Doctors at Miami Children’s Hospital could find nothing wrong. A few weeks and his feet began twisting in. Viviana ordered a walker, then, by July, a wheelchair.
MRIs, CT scans, spinal taps, nothing, nothing, nothing showed up. Chris’ limbs twisted and pulled in, pretzel-like. Viviana could only watch, helpless. She could only rub his back and massage his tight little feet, whispering encouragement until he fell asleep. Then she begged God for help.
Catalina mentioned all this to her employer, Stephanie Ribakoff, who knew a prominent gastroenterologist at Massachusetts General Hospital in Boston and called him. He, in turn, recommended Dr. Nutan Sharma, a neurologist and dystonia researcher.
First, she and Viviana spoke on the phone. Sharma recommended Viviana request a DYT1 genetic test, which Chris had at Miami Children’s. It came back positive. He had dystonia.
Finally, finally, a diagnosis.
But … dystonia? What is that?
LEARNING ABOUT DYSTONIA
Viviana had never heard of it. Nobody in her family had it, but one of her ex-husband’s aunts has Parkinson’s disease, which, Viviana learned on the Internet, is related to dystonia.
Both are neurological conditions that affect muscle control. With Chris’ dystonia, the part of his brain that controls movement doesn’t function correctly. Normally, his brain should tell opposing muscles to work together — one contracts while the other relaxes. Except his brain actually tells muscles to contract at the same time, so they fight against each other. His dystonia is caused by a genetic mutation.
That explained Chris’ muscle tightness and contortions, but now what? A trip to Boston for an appointment with Sharma, then another a year later. Ribakoff helped Viviana pay for the trips. Sharma didn’t recommend surgery because Chris was so young, prescribing Parkinson drugs instead — Sinemet and Artane, plus Klonopin to help him relax. Botox shots in his legs, serial casting. It helped some, in fits and starts. Viviana massaged and massaged his muscles.
Mostly, he was human origami. Two rigid lines of muscle framed his belly button, pulling him into a comma. His right heel rested perpetually on his right hip. He had to hold his stiff, scoop-like right hand still with his left arm if he wanted to pick anything up.
There have been moments, though. Moments when he feels light and is just another goofy kid. This happens a lot in the water. Here he is at the Gaines Park swimming pool in August, bobbing through the swarm of summer campers, propelling himself with arms bent like wings. He ducks under, then surfaces lips first, a taut O sucking in air. Then stretched into a toothy grin.
A week later he’s at his cousin’s birthday party, at his Aunt Julissa’s house, and the other boys sprint down to the pond to poke in it with sticks. Viviana wheels Chris down the grass to the pond’s edge, setting the brakes on the wheels, sitting beside him. He watches. Later, she lifts him up onto the inflatable water slide, 45 skinny pounds of twisted knees and bent elbows and curled toes. He tumbles down and begs her to lift him up there again.
He feels light around animals, which he loves. Here he is in September, about to go canoeing, calling to a dog — “Hi, dog! Hi, dog! I love dogs.” — and it trots over to him. Here he is in October, at the Florida Museum of Natural History Butterfly Rainforest, listening to a story about the blue butterflies, how they’re rumored to cure sickness in people they land on. They flutter around him.
Chris sits very still in his wheelchair. He slowly extends his bent arm and curled hand, index finger pointing out. “Come on,” he whispers. “Please.”
So it’s been bittersweet. Viviana is quick to point this out, to praise Chris’ attitude. But still, long before summer camp and the birthday party, he would get frustrated and angry, trapped by his disability, furious when anyone called him handicapped. He hates that word. Viviana was depressed. Overwhelmed. Late last spring, she reached her limit. She couldn’t stand seeing her son so twisted, weathering spasms, everything a struggle. She called Lisa Paul, a nurse who works with Sharma at Massachusetts General.
“Please,” Viviana remembers pleading. “Please. We can’t do this anymore.”
Sharma called Dr. Michael Okun, a neurologist at Shands Hospital at the University of Florida in Gainesville, medical director of the National Parkinson Foundation and valedictorian of the Palm Beach Lakes High School class of 1989.
He agreed to see Chris.
LISTENING TO HIS BRAIN SING
“In most cases, the dystonia presents as the turning of a foot, say, and progresses very slowly over many years,” Okun explains. “But for unexplainable reasons, we have patients like Christopher who progress very fast.”
Okun, who is a co-director of the Movement Disorders Center at the University of Florida’s McKnight Brain Institute, asked members of an multidisciplinary medical team to examine Chris in July.
Neuropsychologist Gregg Selke spent two days talking with Chris. Neurosurgeon Dr. Kelly Foote, also a co-director of the Movement Disorders Center, examined him. The team met and decided: Chris was a candidate for deep brain stimulation surgery.
It’s a surgery most often used to treat Parkinson disease. In it, Foote makes a small hole in the skull and threads a thin probe, about the size of a hair, through different regions of the brain. Moving millimeters at a time, Foote pauses as Okun listens to the neurons “sing us a song,” Okun explains. “As we move from region to region, it’s like driving across Europe, moving from one country to another and gradually the language changes.”
By listening to the brain sing, Okun can detect a false note — the tiny part of the brain that’s misfiring and telling muscles to contract when they shouldn’t. That’s where the electrode stays, and four charged points interrupt that wrong signal. The goal is to make the brain tell the muscles to work right.
Deep brain stimulation is not a cure for dystonia — currently, there is no cure — but Chris and Viviana were elated. The surgery was scheduled for Sept. 20.
Before the surgery, though, two days of questions and prodding and tests. A medical assistant tries to take Chris’ blood pressure and his arms flail uncontrollably.
“Think about how we’re going to the pool later,” Viviana tells him.
“I can’t,” he says.
“You can. Think about the good stuff.”
“Leave me alone,” he whispers.
“Relax, papa.”
“Leave me alone!”
Soon the Klonopin kicks in and Chris visibly relaxes. Alone with Viviana in the exam room, he asks, “How do they open it?”
“Open what, honey?”
“My head.”
SURGERY DAY
They get up early, 5 a.m., Sept. 20. Chris tells Viviana, “I’m having my surgery today.” They get dressed, Chris in jeans and a plaid shirt, Viviana in a wispy cropped cardigan and black boots with pointed toes and stiletto heels — her version of armor.
Check-in at Shands. And then …
She has to let go of his hand. Her heart is on fire. He looks tiny on the hospital bed. Doctors will screw a halo to his skull then bolt it to the table to hold him still. She can’t watch.
Viviana retreats to the waiting room. Her whole family is there, like they always are. The hours stretch to eternity.
Rick and Michelle Staab and their three kids arrive. Viviana and Michelle have talked on the phone. The oldest, Tyler, is five months older than Chris. He has dystonia, too, and had deep brain stimulation surgery in June. He runs around the waiting room and crawls on Michelle’s back.
At 3:30 p.m., Okun enters the waiting room. Chris did really well, he tells Viviana. He believes they have the wires placed in the right spots. Chris showed good response during surgery. Okun is worried about Chris’ right foot, though. It didn’t relax during surgery, but Okun wants to wait six months to deal with it.
“But how did the surgery come out?” Viviana’s mom, Catalina, asks her.
“They say they wish he was more awake, but they got such a good mapping of his brain,” Viviana replies, and pauses.
“But his foot …
“I didn’t want to hear that it was fused and it was stuck and they have to reconstruct his bones. This is just …”
“Listen,” Catalina stops her, “the last thing you lose is faith. He’ll walk again.” Tears well over Viviana’s eyelids, slipping down her cheeks.
In his dimly lit recovery area, pale yellow curtains drawn around his narrow bed, Chris is groggy, his eyes almost closed, a large, white rectangular bandage taped to the top of his shaved head. He looks so little under the blanket, little but unbent. His left arm rests on top of the blanket, straight and relaxed. His small left land lays flat and uncurled.
Viviana sits on the bed facing him, feathering her fingers through his, wiping her tears with her wrist.
“I’m worried about his foot,” she begins, then stops. She gazes at him for several heartbeats. “He’s so beautiful. My baby. My little man.”
WAIT AND SEE
A week later, late afternoon, he is home in Viviana’s bed, sleeping. Viviana sits beside him, trailing airy-soft fingers across his head. “Tyler’s mom says this is the honeymoon period, like he’ll show a lot of improvement then the symptoms will come back really strong,” she whispers. “So it’s temporary, right? I mean, the wires aren’t even on. But … look at his hands!”
They are straight and flat. For now.
But the symptoms do come back, worse than before.
Another trip to Gainesville, then, for the second surgery to connect the wires in his brain to batteries.
It happens the morning of Oct. 20, this time much swifter. Neurosurgeon Foote and his team work on one side at a time, creating a pocket under the skin of Chris’ chest and inserting a silver pulse generator about the size of a pack of Tic-Tacs. Through several incisions, they pull the thin wire from the place in his skull where it enters his brain, threading it underneath his scalp and down his neck to his chest, connecting it to the battery.
In the recovery room, Chris is exhausted, nauseated and crying, but Viviana’s on point. Pam Martin, Foote’s nurse, is turning the batteries on with a hand-held computer. If they’re doing what they should, the wires in his brain are now sending out electrical pulses, telling the brain to send the correct signals to his muscles.
Now. “Now we just wait and see,” Viviana sighs, shrugging.
HER SON JUST WALKED
There’s nothing harder than waiting. Over and over again, Viviana tells herself not to get her hopes up, that the surgery might not work for months, if at all. She tells herself it’s not a cure, that Chris will always have dystonia.
Still, she watches.
Week one, and his hands unfold. They stay that way. Into week two, he’s gripping a fork at the dinner table, shoveling talapia and rice with black beans into his mouth. Viviana beams. “Look at you go, papi!” He politely requests seconds.
Back and forth to Gainesville to have the battery settings adjusted. Back home. They’re living with Viviana’s parents, because she knows she needs help. She hated to give up their apartment, but did it anyway. She asked her boss at the insurance agency, where she writes policies, to lay her off temporarily.
Week three, after the second appointment to set his batteries, and his arms unfurl. One day at lunch in mid-November, he downs five tacos, then lowers himself off his dining room chair, crawling on hands and knees into the family room to play a baseball video game. He grips the control in loose hands, operating knobs and buttons with his thumbs. Less eagerly, he picks up a pencil to do his math worksheets.
Ten pounds later and his ribs start to disappear. His triangular face fills in to soft curves. “He just eats and eats!” Viviana marvels.
In early November, Shands pediatric orthopedist Dr. Raymond Woo determines Chris doesn’t need surgery on his right foot. Chris gains 10 more pounds. By month’s end, he returns to Mrs. Rossello’s second-grade class at Meadow Park Elementary, still using his wheelchair there because, though he’s much more mobile, he’s not 100 percent steady on his feet.
On an evening in mid-January, she doesn’t remember the exact day, Viviana and Chris are playing on the living room floor. It’s near bedtime. Out of the blue, Viviana remembers, Chris informs her, “I can walk.”
“Show me,” she says.
He hoists himself up using the couch. Balanced on his spindly left leg, his right foot is still severely turned in. He swings his right leg forward, puts his weight on it briefly, then quickly brings his left leg up to it. He takes a step.
Viviana doesn’t say a word. She forgets to breathe, spellbound, afraid of disturbing him.
He takes halting steps all the way to the bathroom, leaning against the wall for support. He brushes his teeth, then walks to his bedroom and gets into bed.
Viviana is in a daze. She follows Chris into the bedroom they share. She decides not to flip out. Instead, she remembers tucking him in, kissing his cheeks and telling him, “Good job, papi!”
Her son just walked.
HER SON JUST WALKED!
PLAYING AND RUNNING TODAY
And then, hyperspeed.
Physical and occupational therapy. More trips to Gainesville for battery adjustments. Chris and Tyler Staab, who lives there, become best friends — Chris turns Tyler on to hip-hop.
On March 5, Viviana and Christopher attend a fund-raiser for the Movement Disorders Center with the Staabs. Tyler isn’t doing well today. He had sprouted up and his head grew, so the wires in his brain moved. Because they’re so specifically placed, if they move, the dystonia symptoms can return.
Tyler had to have the entire surgery redone in February. This day in March, he’s still adjusting, his hands contorted, his jaw so tight he has a hard time speaking. It’s a difficult contrast beside Chris, who is doing so well, who doesn’t walk when he can run.
Later, driving home, Viviana is reflective.
“That’s a possibility with Chris, I know it is,” she says. “His leads could move, and if that happens, it happens. I can’t worry about that now. God has blessed us so much, and all I can think is that he’s doing well today. He’s walking today. He’s playing with his cousins today. He’s running today.”
Today, his left foot is turned in significantly, but readjusting the settings of his batteries should help. Today is like the Saturday in March, his birthday party, and he is running.
He is running, a glimmering little boy snatching a hot dog on his way back to the pool, suffering his mother’s kisses, secretly needing them.
Running and leaping, flying through the air, a bird, a balloon, shrieking and laughing as he lands with a tremendous splash.