Friends rally to help 4-year-old with rare childhood disease

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Imagine inexplicably gaining 20 pounds over the span of three months. Doctors suspect poor diet and lack of exercise until, suddenly, the lungs give out. Doctors induce a medical coma for over two weeks.

This frightening medical scenario is the real story of Banner Mazza. Banner is a 4-year-old boy from Warwick. He loves superheroes, which is appropriate, because he is named after Bruce Banner, better known as the Incredible Hulk.

Last September, he was diagnosed with ROHHAD, an untreatable genetic condition. ROHHAD affects the autonomic nervous system (controls breathing and heartbeat) and the endocrine system (responsible for growth, hormones and metabolism). ROHHAD does not directly cause death. When a child with ROHHAD dies it is often due to inability to breath or cardiac arrest.

Since his diagnosis, he has been treated at the Pediatric ICU at Hasbro Children’s Hospital and the Boston Children’s Hospital. By his fourth birthday, Banner endured many surgeries, respiratory failure, chemotherapy and a tracheotomy. As of April 2019, Banner’s family enrolled him in a clinical trial in an attempt to learn more about the disease. Part of the reason so little is known about ROHHAD is because it is incredibly rare. There is a 1 in 73 million chance of a child developing this disease.

Recently, Banner was removed from the hospital and is now living at home. A disease like ROHHAD causes complications that need a lot of specialty equipment just for the sake of quality of life. Children with ROHHAD have trouble breathing, making it difficult for them to exercise at all. Weight becomes a cyclical problem. Rapid onset of obesity is where the disease gets the first two letters of its acronym.

In order to help the family meet the costs of home care, friends have planned at least two events to help raise some of the funds needed for this equipment. The first is a car show for Banner at The Woods Tavern in West Greenwich on Saturday, June 29 from 9 a.m. to 1 p.m. The second is a prom at the Crowne Plaza on July 13. The car show is being organized, in part, by a friend of the family, Jim O’Connell.

O’Connell said, “We’re raising money for the machinery that he is going to need to survive. They’re [also] going to need a van…They’re going to redo the house so it’s a little easier for him to get around.”

There will be several raffles at the car show. The grand prize for the raffle will be two tickets to see Billy Joel in September; transportation is included in the prize. The second prize will be tickets to see the Red Sox play the Yankees on July 28, with a tour of Fenway Park before the game. Transportation to the game will also be included.

Nancy Jeff, Banner’s grandmother, has established a GoFundMe page, bit.ly/bannersfight. The page has raised about $12,000 of the $20,000 goal.

Jeff said, “[When he was in Boston], it was hard. I don’t drive on the highway, so my neighbor helped me.”

Banner was treated  at Boston Children’s Hospital for more than six months. Since he has been home, Jeff has been able to see her grandson much more often. Life for Banner in the hospital was hard. Banner’s mother, Lyndsay Sears, spoke about the ups and downs of his time at the MICU and the ultimate decision to bring Banner home.

“Being at Boston Children’s, MICU is keeping him alive, but he’s not living. And we need to go home.” Sears said, “It was a necessary move and the first week was tough.”

Banner’s condition forced him to stay in his hospital bed for long periods of time. According to Sears, Banner became depressed and lost the ability to walk from his muscles degenerating.

Sears said, “We’re going to have to need to do some serious PT to get rid of that. He’s got strength. He’s super strong.”

As far as Banner’s depression, Sears says, “I think he’s doing so much better, just being around his home, and his toys, and his brother. He sees his brother playing and it makes him want to play more.”

His brother, 2-year-old Blaze, was hardly 18 months old when his big brother went to Boston Children’s Hospital. The two of them play with their superhero action figures together.

Sears has partnered with other ROHHAD charity organizations, ROHHAD Fight Inc. in New York, and The ROHHAD Association in Scotland. The ROHHAD Fight was created for a girl named Marisa by her mother. The ROHHAD Association was founded by Lisa Hunter for her son, Aaron.

“They’re raising funds to get research. Basically, we’ve all just become a big family and we lean on each other and they’re doing a lot and they’re awesome,” Sears said.

O’Connell said, “I’ve got the greatest respect for her. She is by far the strongest woman I’ve ever seen.”

The July 13 event is a grown-up prom at the Crowne Plaza in Warwick. The prom will go from 6:30 p.m. to 12 a.m. Tickets cost $50 per person, and there is going to be a buffet and live music from three bands, Black Tie Affair, The Pogs and Reunion. Other activities at the prom will be raffles, drinks, photo booths and more. Tickets for the prom will be sold at the car show and can also be purchased at eventbrite.com (search for “A Banner Event Prom 2019”).

O’Connell is looking for sponsors for the upcoming fundraiser next month. The doctors and nurses that treated Banner in Boston have been invited to the prom. The sponsor’s name would be on the reserved table for the doctors. Sponsors will also receive a special thank you from Banner’s family. Those interested in sponsoring the event, and helping thank the people who have treated Banner, contact Jim O’Connell at 265-6925.

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