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Young ROHHAD patients

Trevor's tracheostomy requires suctioning several times a day.

Trevor's tracheostomy requires suctioning several times a day. (July 6, 2011) Photo Credit: Newsday/Alejandra Villa

At the age of two, a seizure caused Trevor Ward to suddenly stop breathing. The lack of oxygen to his brain left him severely brain damaged. It would take years for doctors to confirm it was a rare disorder called ROHHAD (Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation) that had caused the seizure. For Brigid Cooleen, being diagnosed with the disease at an early age hasn't stopped her from becoming an honor student at her high school.

Trevor's tracheostomy requires suctioning several times a day.
Photo Credit: Newsday/Alejandra Villa

Trevor's tracheostomy requires suctioning several times a day. (July 6, 2011)

Leslie Ward prepares to change the breathing tube
Photo Credit: Newsday/Alejandra Villa

Leslie Ward prepares to change the breathing tube attached to her 20-year-old son Trevor Ward at their home in Centennial, Colo. (July 6, 2011)

Leslie Ward bathes her son Trevor Ward, 20,
Photo Credit: Newsday/Alejandra Villa

Leslie Ward bathes her son Trevor Ward, 20, at their home in Centennial, Colo. (July 6, 2011)

Leslie Ward bathes her son Trevor Ward, 20,
Photo Credit: Newsday/Alejandra Villa

Leslie Ward bathes her son Trevor Ward, 20, at their home in Centennial, Colo. (July 6, 2011)

Leslie Ward shaves her son, Trevor Ward, at
Photo Credit: Newsday/Alejandra Villa

Leslie Ward shaves her son, Trevor Ward, at their home in Centenial, Colo. (July 6, 2011)

The Ward family spends some quality time before
Photo Credit: Newsday/Alejandra Villa

The Ward family spends some quality time before bedtime at their home in Centennial, Colo. (July 6, 2011)

Trevor plays with his younger brother Jared, who
Photo Credit: Newsday/Alejandra Villa

Trevor plays with his younger brother Jared, who often puts aside his own needs to help their mother and care for Trevor. (July 6, 2011)

Trevor Ward plays with his younger brother, Jared,
Photo Credit: Newsday/Alejandra Villa

Trevor Ward plays with his younger brother, Jared, who often puts aside his own needs to help their mother care for Trevor. (July 6, 2011)

Trevor snuggles with his father Steve at bedtime
Photo Credit: Newsday/Alejandra Villa

Trevor snuggles with his father Steve at bedtime at their home in Centenial, Colo. (July 6, 2011)

Leslie Ward wheels her son, Trevor, to watch
Photo Credit: Newsday/Alejandra Villa

Leslie Ward wheels her son, Trevor, to watch his cousin play a Little League baseball game in Centennial, Colo. (July 6, 2011)

Trevor is greeted by relatives and friends as
Photo Credit: Newsday/Alejandra Villa

Trevor is greeted by relatives and friends as he makes an appearance at his cousin's Little League game in Centennial, Colo. (July 6, 2011)

Leslie Ward takes her son, Trevor, to watch
Photo Credit: Newsday/Alejandra Villa

Leslie Ward takes her son, Trevor, to watch his cousin play a Little League baseball game in Centennial, Colo. (July 6, 2011)

Despite being diagnosed with ROHHAD at an early
Photo Credit: Newsday/Alejandra Villa

Despite being diagnosed with ROHHAD at an early age, Brigid Cooleen, 15, is an honor student at her High School in Maine. She's thinking about attending college out of state — a quest for independence that makes her the best hope for parents of younger ROHHAD patients. (April 16, 2011)

Despite being diagnosed with ROHHAD at an early
Photo Credit: Newsday/Alejandra Villa

Despite being diagnosed with ROHHAD at an early age, 15-year-old Brigid Cooleen is an honor student at her High School in Maine. Brigid’s weight gain eased when she was 10, but major hurdles remain. She must sleep hooked up to a ventilator; covering the tracheotomy hole in her throat during the day with a favorite scarf adorned with peace signs. (April 16, 2011)

Despite being diagnosed with ROHHAD at an early
Photo Credit: Newsday/Alejandra Villa

Despite being diagnosed with ROHHAD at an early age, 15-year-old Brigid Cooleen is an honor student at her High School in Maine, N.Y. (April 16, 2011)

Despite being diagnosed with ROHHAD at an early
Photo Credit: Newsday/Alejandra Villa

Despite being diagnosed with ROHHAD at an early age, 15 year-old Brigid Cooleen is an honor student at her High School in Maine, NY. (April 16, 2011)

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