According to a publication from the Warwick Beacon, friends and family of 4-year-old Banner Mazza are raising money for the boy’s medical expenses. Mazza was recently diagnosed with ROHHAD, a rare condition characterized by sudden, severe weight gain and breathing problems.
ROHHAD is an acronym for Rapid-Onset (RO) obesity with Hypothalamic (H) dysregulation, Hypoventilation (H), and Autonomic Dysregulation (AD).
The clever naming scheme describes the major symptoms of the condition. Rapid weight gain can occur over the course of a few months, with seemingly little cause. Dysfunction of the hypothalamus and autonomic nervous system can cause body temperature fluctuations or heart palpitations. Most ROHHAD-related deaths occur, however, from complications related to dramatically slowed breathing — especially during sleep.
Although scientists suspect a genetic origin to the condition, no disease-causing gene has yet been identified. To date, the medical community isn’t sure what causes ROHHAD, and treatments are focused chiefly on providing relief of individual symptoms as they occur. Early detection and treatment remain the best alternative to outright cures.
Though the number of cases of ROHHAD in medical literature are limited, figures suggest that up to one in four children with ROHHAD will die of respiratory failure.
Banner Mazza’s Story
Banner Mazza, a 4-year old resident of Warwick, Rhode Island, gained twenty pounds in three months.
Physicians suspected that poor diet was the cause of the rapid weight gain, until Mazza’s lungs failed. He was placed in a medically-induced coma for half a month, and was diagnosed with ROHHAD not long after. Surgeries, tracheotomy, and even chemotherapy followed.
Mazza is back home now, but still needs a lot of specialized care to live with his condition. Friends and relatives are organizing fundraisers to pay for breathing assistance devices, a specialized van, and house refitting for the Mazza family.
Nancy Jeff, Mazza’s grandmother, started a GoFundMe page you can find here.
Friends of the Mazzas are planning a grown-up prom at the Warwick Crowne Plaza on July 13th. The event runs from 6:30 to midnight. A buffet, drinks, live music, and a raffle will be available. Tickets are available for purchase here.
Inability to pay medical expenses plays a role in two-thirds of all bankruptcies in the United States. Do you think it’s right that families trying to support their kids are forced to fund treatment with online fundraisers and ticket sales? Share your thoughts with Patient Worthy!