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Publish Date: 5/21/2005

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Lezlee Leonardi wheels her son Nate Williams, 17, across a gravel driveway May 4 to go groom the family’s horses, Moon and Lucky, which are boarded in Mead. Nate loves the horses, which the family sees on a weekly basis and sometimes gets a chance to ride. Times-Call/Erin MCracken

Life, uninterrupted
Nate Williams may have spina bifida, but he’s still a normal teen


LONGMONT — All the nurse needs is a vein.

But they are hiding — deep in the feet, arms and palms of Nate Williams, a Longmont High School student with coppery hair, slate-blue eyes and paperlike skin.

But Nate doesn’t complain. He never does.

Not even when the nurse digs a needle between his first and second knuckles. She thinks she spots a viable vein, then it disappears.

She sighs. Nate consoles her.

“Yeah, I feel that way, too,” he says.

The nurse is still sticking Nate 20 minutes later, but no luck. She will have to return tomorrow and try again when Nate’s veins behave.

The nurse looks up, finally removing the needles from under his skin.

“Did that hurt?”

“No.”

“Liar.”

nnn

Nate, who will turn 18 next Saturday, is a bona-fide teenager.

He occasionally asks the bus driver to drive past the pretty girls at cheerleading practice.

He talks about driving what he considers the ultimate ride: a Ford pickup — red, of course, one of Nate’s favorite colors.

He pokes at his older sister and brother, Haley and Aaron. When they strike back, it is they — not Nate, the baby of the family — who get scolded by Mom.

“In so many ways, he’s the typical kid. But he has every reason to be sad or angry. And he’s not,” says his mother, Lezlee Leonardi.

Nate has spina bifida, a birth defect in which the spinal column doesn’t fully enclose the spinal cord.

He has danced with death four times in the past two years. He’s had 45 surgeries. Fifteen of those were back surgeries in a two-year period, done to straighten his S-shaped, hunched spine.

Nate doesn’t like to talk about those times. He’d much rather chat about Colorado sports teams: the Nuggets, the Broncos, the Rockies. Or his 5-month-old niece, Peyton Ann. Or how your day was.

“If I said to him ‘Let’s go skydiving tomorrow,’” says his father, Dan Williams, “he’d be like, ‘Throw me out of the plane.’”

Leonardi says she intended to name her first son Nathan, which in Hebrew means “gift of God.” She thinks now the name was meant for her second son.

Leonardi says her third pregnancy was different from the previous two. The doctor said the baby didn’t move much because he was tired.

Nate’s parents had never heard of spina bifida, a condition formed in the first few weeks of gestation. The birth defect, caused by both environmental and genetic factors, affects about one out of every 1,000 newborns in the United States, according to the Colorado Spina Bifida Association.

Forty years ago, babies with spina bifida rarely lived a week, let alone to their first birthday. Long-term survival into adulthood is now common with aggressive treatment and surgeries.

“His life is certainly challenging,” Nate’s father says. “But he lives with such courage despite everything.”

The day after his birth, Nate was at The Children’s Hospital in Denver awaiting his first surgery, which would close the opening on his back.

“It was like looking through a little window into his spine,” Leonardi says. “His nerves would wiggle when he cried.”

Through the years, Nate has endured a back muscle transplant, skin grafts, pressure sores, five broken legs, displaced organs and osteoporosis, just to name a few of his medical hurdles.

He uses 150 catheters each month, at $1.50 a pop. He has 10 doctors he sees regularly.

He has had two surgeries to alleviate what is called a Chiari malformation, a structural problem in his cerebellum.

Leonardi says all of Nate’s surgeries and complications have affected his mental capacity, which is at a third- or fourth-grade level.

“He’s a whiz at PlayStation and using a cell phone but has a hard time sequencing,” like following a recipe or finding peanut butter in a grocery store, Leonardi says.

His daily routine is different from those of “so-called regular teenagers,” Dan Williams says. “But Nate’s still a regular teen.”

Nate lives alternate weeks with his parents, who are divorced. Each day, Nate wakes up around 6 a.m., readies for school and takes the school bus to Longmont High.

His favorite classes are choir and drama.

After school, he takes a special transit bus to the Longmont Youth Center, a place thumping with rapper Li’l John on the stereo, MTV 2 on the tube, and trash talkin’ on the basketball court or at the billiards table.

He owns the place, zooming from scene to scene and bumping knuckles with his buddies, who call to him, “What up, Nate Dawg!”

Twice a week at the center, a nurse visits Nate to draw his blood because, in August 2004, a blood clot stopped his heart at 3 a.m. Now, Nate takes blood thinners, and the blood draws check that the medication doesn’t pollute his system.

But Nate doesn’t want to talk about “those stupid pills.” Or his body, a mural of surgical scars that he and his family call “shark bites.”

He’d rather show off his $17,200 custom-painted motorized wheelchair — which took a year and a half for his three health insurance plans to approve.

Nate brags that the chair can reach 25 mph.

Like any teenager with his first set of wheels, Nate has taken off joyriding in the chair — painted in a Stars and Stripes motif — more than once without telling anyone where he was going.

Nate gets grounded occasionally.

That doesn’t stop him from being “a man about town,” Dan Williams says.

You’ll see him at Longmont High football games. At Twin Peaks Mall. Or heading home.

He uses a manual chair when he rides in a family vehicle because they don’t have a wheelchair lift. That takes away his independence, his mother says.

But Nate doesn’t want to talk about that. He’d rather clean you out in a poker game.

nnn

The nurse sticks two bandages on the fruitless pinhole marks on Nate’s hands.

He asks the nurse how her vacation was. She asks him about school. They talk about the Superman T-shirt he is wearing.

But the thumping of a basketball game outside is calling Nate out of the Youth Center office.

Nate, sitting in a 200-pound wheelchair with oxygen tubing up his nose and weakened arms, sheds the one, small reminder that his health is imperfect: his Band-Aids.

“I’m a new man,” he tells the nurse as he waves goodbye.

He’s out the door.

Melanie M. Sidwell can be reached at 303-684-5274, or by e-mail at msidwell@times-call.com.

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