Breakfast proceeds will help boy with rare disease

Warwick Beacon ·

Lyndsay Sears reluctantly talks about her son, Banner, not because she doesn’t want to talk about the rare disease he has, but because she knows she’ll start crying.

It’s hard to imagine she wouldn’t cry. There is no known cure for ROHHAD that causes the early onset of obesity. Banner is one of 100 known cases in the world, meaning he is one out of 73 million people with the disease. ROHHAD stands for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H) and autonomic dysregulation (AD).

On Sunday morning, more than 150 people came together for a breakfast fundraiser for Banner. Banner, who will soon be four, was at the breakfast intrigued by the superhero comic characters who turned out to entertain kids and adults.

The stark reality is that the outlook for Banner is bleak.

“Nobody knows what it is,” Sears said of the disease. She knows his time and their time together is limited. “Every day is precious for him,” she said.

On Dec. 4 she and Banner will travel to Boston Children’s Hospital for the surgical removal of two tumors associated with the disease and believed to be responsible for the boy’s dramatic shift in behavior in recent months. At one moment Banner can be playful like many children his age and in the next combative to the point where he kicks, punches and yells. Given his accelerated development brought on by ROHHAD, he is strong, which raises Lyndsay’s concerns for his younger brother, Blaise, who is not even two years old.

“Everything in his body is off balance,” said Lyndsay.

Further stressing Lyndsay and Banner’s father, Corey Topp, the boy is on a CPap machine while he sleeps. The machine provides pressurized air, and Banner needs to be monitored throughout the night. While they no longer have a relationship, Corey is assisting where he can, adding that he has never felt closer to the family and what has become a larger community effort to help.

Lyndsay expects Banner faces a seven- to 10-day recovery from surgery at Boston Children’s followed by additional time at home. When he is ready, she would use the funds raised from Sunday’s breakfast to enroll him at Meeting Street School.

“They are equipped for him mentally and physically,” she said of Meeting Street.

She feels the school would be stimulating and educational for Banner while giving the family a break from the near constant attention he demands.

Pulling together Sunday’s event were Banner’s grandparents, Kevin and Nancy Jeff and Jim Connell. Kevin and Jim are co-workers at Pepsi-Cola, and the company contributed to the event along with many others, including Citizens Bank, Dunkin Donuts and Antonio’s Bakery. The raffle included two tickets to a New England Patriots game with a tailgate party and limo ride.

Connell set a $5,000 goal, but that was easily surpassed. At last count Sunday night, the breakfast, raffle and donations totaled $12,000.

Banner is named after Bruce Banner, a.k.a. the Hulk, from Marvel Comics. Because of this, O’Connell visited RI Comic-Con in Providence and invited several model characters from Marvel Comics to come to the breakfast. There was a lineup for Banner.

He can use the help of every superhero, and as it turns out, the community, too.