JACKSONVILLE, Fla. – A Robert E. Lee high school band student lies in a hospital bed at UF Health, dreaming of playing his coveted trumpet again. Tory Griffin, 18, is paralyzed from the neck down. A rare disorder sneaked up on him, just two months ago.
"It started in my right shoulder and I felt pain," Tory said.
He says he ignored that pain at first, but in just a matter of minutes, Tory says his body felt like it was on fire. Within two hours, he couldn't move.
"I really thought it was a stroke, because he was saying he couldn't move his right side," said Tory's dad, Tory Griffin, Sr.
But it wasn't a stroke. It was something called Transverse Myelitis, a rare condition that affects multiple levels of the spinal cord, like an aggressive form of Multiple Sclerosis. No one knows why it attacked Tory, and doctors at UF Health aren't sure what the future holds.
Dr. Stuart Glassner, a Neurocritical Care Attending Physician, says because Tory has not shown any type of motor response below the neck, it is not a very good prognosis. But, he says, there is hope.
"There have been changes," Glassner said. "His sensory ability on his extremities. He's starting to feel, not just touch but also hot and cold and also vibration. That's very encouraging. We want to see him starting to move the extremities and most importantly his diaphragm."
Griffin's mother, Tawanda Gallion, is encouraged by what she considers a breakthrough that came over the past couple of weeks.
"He didn't talk for a very long time, and for the past couple of weeks, he's been talking," she said. "He has so many dreams and hopes and, you know playing that instrument, I was just heartbroken you know, for him to not be able to move."
"We have to get him through it," said Heather Wood, a long-time critical care physician assistant at UF Health, and now advocate for Tory.
Wood is trying to find financial support, to help the 18-year-old patient transition back into a productive life.
"There's speculation that he will get sent out of town to a ventilator nursing home away from his family and away from everything that he knows and we really want to keep him with his family, keep him in school, keep him a part of his community and a productive member of society, so we just had to jump in," Wood explained.
Part of that means finding the resources to help him.
"He'll need some special equipment so he can be on his computer and be able to control it with his mouth, his chin, or his tongue. We'd like to keep him in school, he's a huge music lover, he says all he wants to do is continue to make music. We want to see what we can do to make that happen," said Wood.
Tory says his family helps keep his spirits up, as he lies in the hospital bed, day after day. He's eager to get home, to be able to spend time with his younger siblings.
His 14-year-old sister Brianna says she misses "aggravating" her older brother, but admits she hopes he makes a strong recovery. And Tory's younger brothers say they miss wrestling him on the floor.
"He just bought this horn and he played it all day, all night, ya know, disturbed the neighbors and everything," Tory's mom said smiling as she shared her son's passion for music. You know the neighbors asked me, they were like 'why we don't hear the horn anymore?' They miss hearing him play this horn. He played it all day and all night."
Before he became ill, Tory also bought himself a piano, both instruments purchased with the money he made, working the Alvin Brown re-election campaign, walking door-to-door encouraging people to vote in the race for mayor. But now, the family is focused on getting him home, to a house that needs some real adjustments.
Tory's mother, Tawanda Gallion, is a certified nursing assistant, a home health provider herself so she knows what it takes, and it starts with the basics: The bathroom will need to be expanded to make way for a wheelchair and a lift to move him into the tub or shower. Ramps are needed, both inside and outside the home, for wheelchair access. And, Tory will need full-time care, 24 hours a day, and a lot of equipment to keep him alive.
Gallion says she has hope Tory will come home and will be healthy once again.
"I pray, I have faith and I believe that he's gonna breathe again and move again," she said.
Gallion also hopes her son get the chance to play his horn again as well.
Meantime, Tory has one message for anyone who hears or reads his story.
"You know, just stay strong and pray for me," he asked.
If you would like to donate to Tory, a GoFundMe account has been set up.
For more information about Tory's rare disorder Transverse Myelitis, go to MyElitis.org.