ROHHAD patient disabled after seizure at 2

When Trevor Ward was 2, he stopped breathing. Years later he was diagnosed with ROHHAD -- rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation -- a rare disorder that requires 24-hour care mostly administered by his mother, Leslie. Warning: Graphic medical procedures. Viewer discretion advised. Videojournalist: Alejandra Villa (July 14, 2011)

When Trevor Ward was 2, he stopped breathing. Years later he was diagnosed with ROHHAD -- rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation -- a rare disorder that requires 24-hour care mostly administered by his mother, Leslie. Warning: Graphic medical procedures. Viewer discretion advised. Videojournalist: Alejandra Villa (July 14, 2011)

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CENTENNIAL, Colo. - There's thick black hair on his chest, a checkered racing flag and flames tattooed across his left bicep. He has a girlfriend and a taste for Starbucks lattes.

The illusion of adulthood ends at bath time. That's when Trevor Ward, 20, sits cross-legged in the tub at his parents' home, splashing in the sudsy water with childlike wonder.

His mother -- his caregiver since Trevor was stricken by a mysterious brain disease as a toddler -- wipes him down with a washcloth, carefully working around the breathing tube attached to his throat.

After a shampoo and rinse, she helps Trevor out of the tub with a grunt.

"Ugh, you're making me old," Leslie Ward, 41, says in mock protest. Trevor, at 6-foot-1, 235 pounds, hovers over his mother, her petite frame positioned under his right arm.

On June 10, 1993, 2-year-old Trevor suddenly stopped breathing in his bed. His stunned parents couldn't wake him. They rushed him to the hospital, where doctors set out to find out what had gone wrong. Specialists ran tests, but it would take years to confirm it was a rare disorder called ROHHAD that had caused the seizure.

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By then it was far too late. Trevor's brain had been deprived of too much oxygen, leaving him developmentally disabled and reliant on a ventilator 24 hours a day for life. He can walk but he tires easily and prefers a wheelchair.

"I always thought he'd get better, but the reality is he won't read or write. He'll never dress himself," Leslie says. "It could be worse: He could not be here at all."

Trevor has two protective younger brothers -- Gage, 9, and Jared, 18 -- both of whom were spared from the disease. The family lives in a two-story, Spanish-style home in Centennial, a suburb with stunning Rocky Mountain vistas 35 miles south of Denver.

Trevor's truck-driving father, Steve, works 14-hour shifts making deliveries, leaving Leslie in charge of looking after her grown son.

One morning in July, Leslie sits beside Trevor as he watches "Bonanza," his favorite TV show. She's bathed him and cleaned his breathing tube. Now she's clipping his toenails.

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"Perfect, prefect, perfect," she pronounces minutes later. "You're all clean."

 

'A good life'

Leslie thinks often about that fateful day, her mind scouring with a mother's guilt the events 18 years ago that forever changed her son.

Was it something she missed? How did he go from being a bright-eyed, energetic infant who jumped from couch to couch reciting the alphabet song, to a grown man with the cognitive abilities of a preschooler?

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Shortly after his second birthday, Trevor gained 40 pounds in four months. He's becoming a ball, Leslie thought.

He lost interest in toys and in engaging relatives, even his parents. Some afternoons, his mother would find him staring into space, seemingly in a daze. Each time, he'd snap out of it -- until that day.

At the hospital, puzzled doctors told his parents he appeared to be suffering from "Ondine's Curse," a breathing condition named after a water nymph from Greek mythology who caused an unfaithful mortal to sleep forever.

"We have to find out what's wrong with him," Leslie remembers telling the doctors. "And can we please stop calling it that? My son is not cursed."

 

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Searching for answers

Leslie sent letters to medical researchers around the world detailing Trevor's symptoms, hoping for answers. Friends and family raised money to help pay for a trip to the Mayo Clinic in Minnesota.

Doctors there suspected Trevor had late-onset Congenital Hypoventilation Syndrome, a birth disorder that causes babies to stop breathing when they sleep. But that didn't explain why Trevor had become obese, or why he was fine until his second birthday.

The official diagnosis would come years later when experts on ROHHAD finally tested him. His weight gain started tapering off when he was 5, and he went on a hormone drug-induced growth spurt that made him seem normal, physically.

In the meantime, Leslie trained herself to care for her son, becoming a certified nursing assistant. Friends and family showered Trevor with love and acceptance. He went everywhere with his parents and brothers, from baseball games to outdoor barbecues and parties.

As a special education student, he attended his junior and senior proms. He walked at high school graduation alone, his ventilator tucked inside a backpack. In May, he will graduate again -- this time from a skill-building day program.

"It's not ideal," Leslie says, "but Trevor has a good life."

That was evident on a midsummer evening, when Trevor showed up at his cousin's Little League game only to be greeted like a celebrity.

Leslie wheeled him up to the lawn chairs sprouted along the first base line, joining a throng of relatives.

"It's a family day," he declared.

Moments later, his cellphone buzzed with a text from Dad.

Leslie read the message out loud, bringing a smile to Trevor's face: "T-man, I love you."

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