VALDOSTA, Ga. — Seven years of back-to-back seizures and 17-year-old Ragan Bailey is still holding on during his fight with Rasmussen’s encephalitis.
“It was pretty scary, waking up after a life flight, having a tube going down my throat, suffering pretty much 20-50 seizures a day,” the teen said.
After a second brain surgery that removed his entire right hemisphere last October, Ragan Bailey has now been free of seizures for six months as of April 18, he said.
“He just started seizing so much, and we’ve been life-flighted down to Shand’s twice,” said Shannon Bailey, his father. “The last time he ended up being life-flighted down there, I think he’d had 150 seizures that day, and they just stopped counting at that point.”
Ragan's fight with Rasmussen’s started at 10 years old when the seizures began, and he was officially diagnosed in 2012.
Ragan has stayed positive throughout the experience, said Tammy Bailey, his mother.
“There were times when I was ready to have a pity party,” Tammy Bailey said, "and he would say, ‘Mom, it’s OK; God’s got a plan for this, and it’s fine, and we’re going to be OK.”
Rasmussen’s is a neurological disease that affects one hemisphere of the brain, said Dr. Steven Parrish Winesett, pediatric epileptologist for the University of Florida.
Winesett has been treating Ragan for two years
“The thing about Rasmussen’s is you just keep seizing and it’s not controllable by medicines, and eventually the only way to get rid of it is to take out the whole half of the brain,” he said.
Winesett said only removing a portion of the affected hemisphere doesn’t work.
Ragan discovered this during his first brain surgery when he had parts of the brain’s right temporal lobe eliminated and had the whole side disconnected from the left side.
“The disease, as it goes, it gets worse as it goes,” Tammy said, “and so, eventually he was having so many seizures that we were pretty much in the hospital all the time.”
In recalling the moment when they discovered Ragan was having a full-blown seizure, Shannon said his eyes rolled back, his mouth was open and his head began turning to the left before the shaking commenced.
“That was very scary, the very first one,” he said. “It’s gut-wrenching. It’s very difficult to watch … him go through the really bad ones.”
Tammy said she would feel helpless when Ragan started seizing.
“What do I do, how can I help him with this,” she said. “It’s just that helpless feeling when you’re looking at your child and there’s nothing you can do except wait for EMTs or wait for help to come.”
She said there were plenty of nights when she and Shannon would sleep in Ragan’s room on the floor to watch for overnight seizures or sleep with their door open.
“Not a whole lot of sleep went on during that timeframe,” Shannon said.
Ragan would have 50-60 seizures per day, according to Shannon, who said Ragan was seizure free for two weeks after the first surgery before they resurfaced.
“With different medications and treatments, sometimes they would slow down or pick back up until he started having other issues beside the seizures, loss of motor function on the left side,” Shannon said.
Ragan would have problems with his left leg and arm and his face would droop, his dad said. His eyesight was also affected.
He completed rehabilitation therapy at Brooks Rehabilitation Center in Jacksonville, Fla., and does outpatient physical, occupational, speech and vision therapy.
Currently completing two classes through a hospital homebound program, Ragan said he hopes to attend Valdosta High School for his junior year, if not full-time, at least part-time.
Tammy said following the brain disconnection, it was unsure if Ragan would ever walk again, talk correctly or be completely paralyzed.
Today, Ragan is walking, talking and has a memory that stretches back years. He desires to one day be a pediatric neurologist.
“We’re very, very blessed that he’s come as far as he’s come with everything,” Tammy said.
Amanda Usher is a reporter at The Valdosta Daily Times. She can be contacted at 229-244-3400 ext.1274.