Banner Sears was diagnosed with one of the most rare syndromes in the world, ROHHAD, which causes rapid-onset obesity. It’s a life-threatening disease, and it’s so rare that in order to diagnose it, according to his grandmother Nancy Jeff, medical professionals had to rule out everything else first.
Now, Banner’s grandfather, Kevin Jeff, and a co-worker of his at Pepsi-Cola, Jim O’Connell, are organizing a community breakfast event to raise funds to go towards all the expenses this diagnosis has incurred for the family.
The breakfast will be at the Knights of Columbus on Nov. 25 from 8 to 11 a.m. Tickets are being sold for $10 each and can be bought by contacting Jim at (401) 265-6925, Nancy at (401) 219-0758, or Kevin at (401) 286-7881.
O’Connell said that the goal is to raise as much as possible, but he’s “realistically shooting for $5,000.” He said he expects around 300 to buy tickets and attend the breakfast, and the rest to come through a raffle being held or other cash donations, which can also be sent to either of those three. The raffle includes baskets and gifts that have been donated as well as doing a 50/50 raffle. In addition, two tickets to a New England Patriots game with tailgate party and limo ride will be raffled.
The breakfast will include the usual staples, and other food and drink items, such as coffee from Dunkin’ Donuts and orange juice from Tropicana, are being donated for the event.
Jeff said that Banner’s mom runs a salon and, because of Banner’s diagnosis, she may have to shut it down for a time, which is why donations will help. She said that they have Neighborhood Health Plan, which is helping to cover the medical costs.
According to Jeff, those medical costs include frequents trips to Bradley Hospital, where he is being treated for the rare disease. She stressed how difficult this unexpected diagnosis has been on the family and the 3-year-old boy, who will turn four in February.
O’Connell called it a “sad situation,” and said it’s a struggle for Banner every day.
According to information from a flier the family sent out, the syndrome has put Banner’s nervous system in shock and has weakened his immune system. He is now living at home but has to use a bi-pap machine while he sleeps. He will need continuous care for the unforeseen future, and there is no known cure or treatment, so it’s difficult to determine what exactly his needs will be moving forward.
Banner is named after Bruce Banner, a.k.a. the Hulk, from Marvel Comics, said O’Connell. Because of this, O’Connell went to RI Comic-Con this past weekend in Providence in hopes of getting model characters from Marvel Comics to come to the breakfast, because of the family’s passion for it. He said there will be some there for Banner.