Inoel Finds Treatment for Extremely Rare Endocrine Disorder

At 4-feet-six-inches tall and 135 pounds, Inoel Cruz looks like a large 10-year-old – except he’s only 6. Diagnosed at Valley Children’s with ROHHAD syndrome, Inoel’s rapid weight gain is key to this condition that currently affects merely 100 people worldwide.

“We’re glad to know what he has but it’s also scary,” said Aileen Cruz, Inoel’s mom, noting there’s no cure. “Now it’s a matter of monitoring him closely and managing his symptoms for him to have a normal life.”

Last fall, a life-threatening, elevated level of sodium landed Inoel in our pediatric intensive care unit. The kindergartner’s alarming weight, breathing problems, fatigue and excessive sweating led to visits with various Valley Children’s specialists focused on determining a cause. His terrible chest pains resulted in discovering and removing a 7-inch ganglioneuroblastoma tumor.

“It makes a difference having all the specialists in the same place,” said Cruz, who lives in Exeter. “Inoel isn’t scared because of how the doctors listen to him and explain things at his level.”

ROHHAD stands for rapid-onset obesity with hypothalamic dysregulation, hypoventilation and autonomic dysregulation. It affects the autonomic nervous system (which controls involuntary actions) and the endocrine system, with onset of symptoms typically occurring between 3 and 10 years of age.

Pediatric endocrinologist, Dr. Swati Banerjee, suspected and confirmed the difficult diagnosis for this little-known disease. Today, Inoel’s main health concerns involve his weight, breathing and potentially recurring tumors.

“Inoel has the best team of pediatric experts caring for him,” said Dr. Banerjee.