Disney magic inspires Winter Garden resident living with genetic disorder

Joey Accordino – who was born premature at 26 weeks weighing two pounds and diagnosed with Neurofibromatosis Type 1 at birth – has never had it easy.

The hereditary genetic disorder, which affects one in every 3,000 people, causes benign tumors to develop throughout a person’s nervous system. 

As a result, Accordino, now 23, has had 13 brain surgeries since he was two years old. And the Winter Garden resident currently lives his life with 10 tumors residing in his brain and several more throughout his body.

“Right now, I have 10 brain tumors, but they can't be removed because of where they're located,” he said. “If they were to take them out, they would kill me. They're in the middle of my brain, so they would have to literally dissect my brain. And then I have at least 20 others throughout my body. I have some on my arms, one on my foot, and now I have one by my spine.”

ANOTHER TUMOR

The Chicago native discovered a new tumor near his spine just three weeks ago when he woke up unable to breathe to feel his arms or legs and went to an emergency room in his hometown.

“That's when I found out I had a tumor in my spine,” he said. “Right now, the tumor isn’t touching my spine, but I'll have to get an MRI more often now. They were going to take it out, but then they said if it's not causing any pain to not worry about it.”

Sometimes, his many tumors cause him pain or physical discomfort. And there are days when he might wake up with sudden back pain or a severe headache, he said. He tends to get headaches quite often because of his brain tumors, but the worst are the migraines which make it impossible for him to function.

Ibuprofen usually helps, to some degree, but, unfortunately, the typical medications used to treat migraines – some of which are caused by the Double VP Shunt inserted in his brain when he was two – simply do not work on him.

“I literally can't do anything at all when I have a migraine,” he said. “With my disorder and everything, it's a little different. ... When I'm at the hospital and I have an extreme headache, nothing helps. They've tried everything and nothing works, besides just waiting.”

HANDLING ANXIETY

Despite the challenges Accordino faces on a daily basis due to his condition, he’s never one to complain and is known for his positive and cheerful demeanor. However, he recently began struggling with anxiety.

“Because of NF, I have extreme anxiety,” Accordino said. “I don't take anything for it, but when my anxiety kicks in, it's bad. I break down. And I'm not the kind of person to be sad. I'm always positive and happy. But when my anxiety comes in, I just want to be away from everyone because I don't want to promote sadness. I always want to promote happiness.”

Accordino said his anxiety became worse after his most recent surgery, which took place during his senior year of high school and almost led to his death because a nearly fatal mistake had been made during the procedure. After visiting another doctor at a different hospital, he was informed if he hadn't arrived at that hospital within two days, he would've died. 

During the recovery period after that surgery, he was hospitalized for six months and had to relearn how to speak, walk and use the bathroom. He still lives with the fear that one of his doctors may miss something and the anxiety that, one day, one of his tumors may turn into cancer.

“You never know; doctors can miss things sometimes,” he said. “And I should know because I almost died because of it. But most NF patients, even people I've known, usually die from cancer. Any of my tumors at any moment can turn into cancer. And you definitely hear about that a lot, you know? You hear she died from cancer, or he died from cancer –– it's always cancer. You never hear anything else.”

HAPPY PLACE

Regardless of the health risks he contends with every day, Accordino remains happy and tries to live his life to the fullest.  

He credits his support system of family and friends, the literal 80,000 songs on his phone, and Mickey Mouse as his reasons for remaining so positive. In fact, his decision to move to Central Florida from Chicago came when he was hired by the happiest place in the world: Disney World. 

But he eventually grew bored of the routine of his job and feared Disney would lose the magic it always held for him if he didn’t leave. So he later quit and took a job as a server at a local Buffalo Wild Wings, where he currently works. 

“It got to the point where it started losing its magic for me,” he said. “And I thought, well I don't want to feel this way; I want the magic to go on forever. I love Disney; I absolutely love it to death. I would live in Magic Kingdom if I could. It's my happy place.”

As an annual pass holder who resides only eight minutes from the theme park, he still goes to Disney whenever his schedule allows, or when he wakes up and feels the need go to ’his happy place’ to keep smiling.

“Keeping sane and keeping calm is the biggest challenge for me,” he said. “While I'm in a hospital, I smile through it all, no matter what, and no matter how much pain I may be in. I remember a doctor came in once and asked, ‘How are you laughing and smiling if you're in so much pain?’ But I mean, why would you want to live your life in misery when you can just live happy? I mean, I'm still alive, so why not smile?"