You might not know about it, but ROHHAD is a serious thing to deal with. The name itself stands for rapid-onset obesity with hypothalamic dysregulation, hypoventilation and autonomic dysregulation. In layman’s terms, it’s a life-threatening disease that increases weight gain, slows breathing and affects both the endocrine and nervous system. It also can sometimes cause tumors and behavioral disorders while occurring between 1 and 11 years of age.
For 3-year-old Banner Topp, this is what he’s been dealing with since February, and there’s a benefit called “Get Brutal For Banner!” happening at the News Cafe on 43 Broad St. in Pawtucket on Dec. 6 to cover medical costs.
The entire event was put on by Banner’s father, Corey, after exchanging ideas with his friends on what to do. He’s very grateful for the response it has gotten from the community and he hopes that it’ll make Banner’s life a little easier going forward.
“I went about throwing this fundraiser for my son by throwing some ideas around with two of my good friends, Andrew Bergemann and Matthew Ryan Bellows,” Corey said on how “Get Brutal For Banner!” came to be. “We all love metal, as does my little superhero Banner. We all came up with the idea of throwing a metal show along with the name for it in honor of my son. By throwing this benefit show, it will help raise awareness for ROHHAD. ROHHAD is so rare that only 100 known cases have been medically documented.
“It’s scary and it’s terminal in some cases,” He continued. “It’s a very scary disease that’s put my family and friends through lots of heartache, long nights in the intensive care unit at Boston’s Children’s Hospital and all-around sad times. We’ve spent over seven months worth of time at Hasbro Children’s Hospital in Providence and at Boston Children’s Hospital, if not longer. I would love to say ‘thank you’ for all the support and love Banner and my family has received during these hard, sad, and tragic times. Especially Andrew, Matt and others that I know are working to make this fundraiser all come together. I’m filled with joy to know that I have friends and family that truly, will go to the ends of the earth to help a child, my son to make his and my life just a little easier.”
Both Bellows and Bergemann will be involved due to their bands, Boston’s Scalpel and Providence’s From The Pub To The Graveyard, performing as part of the show. An Unction In Braille (Springfield, Mass.), Found Pece (Haverhill, Mass.) and fellow Boston act Angel Grinder will be rounding out the bill.
“I’ve known Corey for four or five years now and I know the struggle his son has had with ROHHAD,” Bellows mentions. “He is constantly at the hospital and it costs tons of money and time but I know he would do anything for his son. The guy is one of my best friends and when the opportunity came to do something to help him and his family out we jumped at the chance. We got in contact with some amazing bands from Rhode Island and Massachusetts, and got this show together.”
For those who can’t make it, there’s a GoFundMe page titled #BannerSmashROHHAD for any and all donations. Emails are also welcome to Corey’s email at email@example.com to help in other ways if you don’t have any money to donate.
Mark your calendars and come on out to support a very worthy cause.