Community Rallies Around Terry DeCarlo After Diagnosis 

Pictured is a fundraising effort for Terry DeCarlo at The Pub. Tim Barton is shown holding up his phone, connected with Terry DeCarlo through FaceTime, so he could view the event from the hospital.

The LGBT community came out in force to Wilton Manors Nov. 18 to raise money for Terry DeCarlo. DeCarlo is the well-known former executive director of the LGBT+ Center Orlando who led the organization in the aftermath of the Pulse Nightclub tragedy. He left Orlando in 2018.

The 57-year-old activist and philanthropist is known outside of Orlando, too. He’s worked at Care Resource Community Health Centers, assisting on events like the White Party and AIDS Walk Miami and is the former development director at Broward House.

Terry DeCarlointestpic

DeCarlo is currently the communications manager for Broward County Government, but he hasn’t been able to work much lately. 

DeCarlo was diagnosed this year with stage four neck and face cancer. The cancer was discovered after a trip to the dentist because his mouth had started bleeding after brushing his teeth. 

Weeks later he landed in an operating room for a 10-hour surgery on Oct. 15 to remove the bulk of a tumor and start the process of rebuilding his face and jaw.

To complicate matters, DeCarlo said he also had a ruptured intestine in the midst of it all. It equaled two major surgeries within two weeks

“I’ve been home for six days out of the past six weeks,” DeCarlo said. 

He’s now facing recovery time, radiation treatment and then chemotherapy treatment.

DeCarlo said he has up days and down days.

We’re working our way through the woods,” he said. “One day I’m up and everything is great, the next day it’s wow all of the sudden I’m losing hearing in my left ear. It’s been a roller coaster.”

His husband of 22 years, Bill Huelsman, said he has “very good doctors” who said DeCarlo has a “very good outlook” with his forthcoming aggressive treatment.

Meanwhile, all the time spent at Holy Cross Hospital, the Memorial Cancer Institute and in various doctor’s offices has meant increased health care costs, time away from work and dwindling resources.

DeCarlo said while his employer has been very supportive, he’s quickly burning through his vacation days, sick days and family leave time.

In addition, Huelsman said he’s been doing his best to keep a normal work schedule, but that there have naturally been missed work days for him as well. 

Huelsman works at the Michael Murphy photo studio in Fort Lauderdale.

Community response

DeCarlo’s demeanor instantly brightens when he talks about how his friends and the community have responded to his situation. 

“They’ve really turned out and been supportive … really rallying behind us,” he said.

One of the couple’s friends, Brett Rose, recently started a GoFundMe page to help DeCarlo and Huelsman defray some expenses.

As of press time, more than $10,000 had been raised out of a $50,000 goal.

The Pub in Wilton Manors, located at 2283 Wilton Drive, stepped in and joined forces with venerable drag queen Nikki Adams for Nov. 18 recent fundraiser.

Adams put together a line up of performers who donated their tips and organized a silent auction with multiple donors who gave prizes, trips and more.

As the emcee for the night, she kicked off the festivities with a performance of Journey’s song: “Dont Stop Believing.

“We are here to raise some money for a very important person in our community,” Adams said. “He’s done so much in the name of LGBTQ, in the name of HIV and AIDS, in the name of anything that has to do with our community. He’s been a driving force behind it for many, many, many years.”

DeCarlo was not able to attend, but was broadcast on the venue’s TV screens via FaceTime. When he appeared the crowd cheered loudly.

“Can you feel the love in the room Terry?” Adams said. “This one’s for you sweetie!”

Huelsman said about $6,500 was raised at the event.

Pulse memorial

DeCarlo mentioned that he’s been able to stay connected with developments in Orlando through all the surgeries and treatment.

He was able to recently look over the winning design for the National Pulse Memorial and Museum.

“It’s absolutely beautiful – it’s something that will memorialize all 49 victims and the 53 who were injured,” he said. “When we’re not here 100 years from now, something needs to tell the story. This is it.”

For more, go to GoFundMe.com/f/terry-decarlo.c


BLOG COMMENTS POWERED BY DISQUS