Twelve moments of awareness, education, and community.
The original 12 Days of ROHHAD campaign shared Marisa’s family’s experience, one day at a time. Each entry explains a medical aspect of the condition or the practical realities of caring for a child with ROHHAD.
These are carefully condensed summaries of the historical campaign, not verbatim quotations or current medical guidance. The original series includes personal experiences and statements that reflect the time it was written. Read the historical page.
The letters “RO” in ROHHAD stand for rapid onset obesity. Marisa had been below the expected weight for her age at four years old, but in less than a year her weight changed dramatically. Her family described how changes in metabolism made weight management extremely difficult, even with careful attention to food and activity.
The first “H” stands for hypothalamic dysfunction. The hypothalamus helps regulate appetite, weight, temperature, growth, water and salt balance, sleep, and other important functions. The family explained why disruption of this small part of the brain has such far-reaching effects.
The second “H” stands for hypoventilation, a reduction in breathing that can lead to insufficient oxygen and elevated carbon dioxide in the blood. Marisa’s family described how ROHHAD affected her automatic control of breathing.
The letters “AD” stand for autonomic dysregulation. The autonomic nervous system helps regulate involuntary functions involving the heart, blood vessels, and internal organs. The original series described how disruption of these functions can affect children with ROHHAD.
Marisa’s family described her diagnosis and treatment for a neural crest tumor, including removal of a tumor and her adrenal gland when she was four years old. They also explained the importance of continued tumor surveillance.
Because Marisa used a tracheostomy and ventilator, physical activities required careful planning and monitoring. Her family described managing the equipment, watching her heart rate and temperature, and monitoring for elevated carbon dioxide.
Marisa’s family explained why a parent or nurse needed to remain close by. They described concerns about a blocked tracheostomy tube, ventilator problems, suctioning, medication, and continuous monitoring during sleep, school, and activities.
Suctioning and tracheostomy care were part of Marisa’s daily routine. Her family described the time, discomfort, and vigilance involved in clearing mucus and keeping her airway safe.
The family described relying on electrical power for life-sustaining medical equipment. Battery levels, car power, generators, travel arrangements, and unexpected outages all required advance planning.
Common illnesses could become especially frightening. Marisa’s family described heightened concerns about respiratory infections, aspiration, oxygen needs, and the complexity of surgery and anesthesia. They also discussed why her medical team needed to understand her individual physiology.
The original series described visits to the Center for Autonomic Medicine in Pediatrics (CAMP) in Chicago. Marisa underwent extensive monitoring and testing to help guide her care, including evaluation of breathing and autonomic function. Her family explained how stressful these visits could be.
The final day shared the family’s uncertainty about Marisa’s future and their determination to find answers. They asked readers to raise awareness, support research, and help children and families affected by ROHHAD.
For diagnosis and treatment questions, consult qualified medical professionals. Historical family accounts are not a substitute for individualized medical care.
