By Madeline Farber
Published September 17, 2019
In June of last year, Banner Sears, 4, was diagnosed with ROHHAD, which stands for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H) and autonomic dysregulation (AD).
As the name suggests, the condition — which may be caused by a genetic condition, according to the Genetic and Rare Diseases Information Center — affects the central nervous system and causes rapid weight gain. Those with ROHHAD may also suffer from severe respiratory issues.
"Children with ROHHAD appear to have normal growth, development, and general health prior to the onset of symptoms," the information center states. "The cause of ROHHAD is currently unknown. Treatment varies based on the signs and symptoms present in each person."
Banner weighs 70 pounds, which is nearly twice as much as an average child his age.
Banner’s mom, Lyndsay, a hairstylist, of West Warwick, told South West News Service (SWNS), a British news agency, that she first started to notice her son’s weight gain in February of last year — specifically after a nasty bout with influenza A.
“He was 29 pounds at that point and completely average weight," she recalled. "It was almost as if he gained six pounds overnight. His clothing was suddenly tight. I became panicked. I threw out all the junk food and looked forward to an appointment with an endocrinologist at the end of April.”
The endocrinologist Lyndsay took Banner to reportedly told the mom her son’s weight gain was linked to his diet. But Lyndsay said she had a feeling this wasn’t the case.
“I knew this change in Banner wasn’t down to Wendy’s once a week and an hour watching TV at night,” she added. “But I placed my trust in her because she was a doctor and I made efforts to clean up our lifestyle.”
The lifestyle changes didn’t seem to help; Banner continued to gain weight. By the next month, the young boy’s weight had increased by about 10 pounds.
Lyndsay noticed her son also was having trouble breathing, especially when he was sleeping.
“I began to notice that when he was sleeping, he would skip a breath every three breaths,” she recalled. “We had an appointment with our hematologist in June and when she saw us in the waiting room her face dropped. She was shocked and worried about Banner’s weight gain.”
“She immediately recommended we go to another endocrinologist and rushed us to the top of the list,” said Lyndsay.
Shortly after, Banner was diagnosed with ROHHAD.
He’s primarily receiving treatment for the condition at Boston Children’s Hospital, according to SWNS.
Banner gains weight each time his immune system is compromised, according to the outlet.
Last September, he was hospitalized for six months after contracting a viral infection.
“Last September, I heard Banner wake up and thought he was having a bad dream," his mother said. " I wasn’t going to get up but then I heard him wheezing. When I went into his room he was blue and unresponsive. He was rushed to the ER by ambulance. He started seizing and hyperventilating. He stopped breathing."
"With his condition, he can’t regulate his heartbeat or his breathing like a normal person. Even something like a common cold can be very dangerous for Banner and it progresses his condition,” she added.
ROHHAD patients are more likely to develop certain types of tumors. Banner has undergone one surgery to remove a tumor, Lyndsay said. Afterward, he was administered chemotherapy to help delay the onset of his condition, resulting in hair loss.
In December 2018, Banner was also fitted for a permanent trach tube “which has helped ensure he is getting enough oxygen,” his mom said.
“He’s super strong. He’s really determined and stubborn like his mom."
"It was a decision we had to make after a surgery he had to address a tumor. He could no longer breathe effectively on his own after it and we needed him to be properly ventilated.”
Lyndsay said Banner has been mocked because of his condition, and some people — namely adults — have made cruel comments and gestures to her son.
“When we were trick-or-treating last October one of the houses refused to give him candy,” she said. “It was mind-blowing to me that anyone could treat a child like that.”
Added Lyndsay: “He’s just a little kid and he doesn’t understand, which is lucky, but people are just unbelievably cruel.”
Though Lyndsay said her family has been “dealt a devastating card,” they make sure to “take every day as it comes."
“He’s super strong. He’s really determined and stubborn like his mom," said Lyndsay. “[He] is such an amazing little boy and I want him to have the best life possible.”
As for the prognosis, the Genetic and Rare Diseases Information Center says “the long-term outlook for people with ROHHAD varies."
It continues: "Children who are diagnosed early and appropriately managed can have a good quality of life."