CLAY COUNTY, Fla. - Sydney Lewis knew something wasn’t right, but she shrugged it off.
The first baseman on the Clay High School softball team and vice president of her senior class was too busy to slow down. She was focused on schoolwork and college and getting the Blue Devils back to the state playoffs.
But the physical bothers were getting difficult to ignore.
Sydney, 17, noticed the left side of her face had started going numb, almost like she’d just had Novocaine for a dental procedure. It caused her to drool significantly. Mentally, she’d drift in and out for a few seconds at a time.
Sydney saw the symptoms as just stresses of the end of her senior year. She thought that it could have something to do with how she was eating.
Clay High assistant softball coach Crystal Rice (pictured left) saw those signs and thought that something was off — and it was.
Rice alerted Sydney’s father, longtime Blue Devils coach Matt Lewis, that he needed to talk to his daughter about what was happening.
That set off a chain reaction: a quick trip to the doctor, hospitalization and then a diagnosis — tumefactive multiple sclerosis, one of the rarest variants of the potentially debilitating disease.
"God put her in that situation right there," Matt Lewis said of Rice. "I think all of us coaches are in that to some extent. You know your kids. You see something different in them. And you’ve just got to speak up. That’s the most important thing."
In MS, the immune system destroys myelin, the protective covering of nerve fibers, and disrupts communication between the brain and the rest of a person’s body, according to the Mayo Clinic.
"You go from just doing your normal, everyday life to being like ‘OK, you have a disease that’s going to change your life forever,'” Sydney said.
According to the American Journal of Emergency Medicine, tumefactive MS is extremely rare and can often be misdiagnosed as a brain tumor. It occurs in “one per 1,000 cases” of MS or “three cases per million per year.”
Sydney was one of those.
And it all happened in what felt like the blink of an eye.
Sydney, a four-year player for Clay, has grown up around the Blue Devils softball program. Matt (pictured right with Sydney) coached his first Clay team in 1997 and won a state championship in 2001. Two months after that title, Sydney was born and she’s been as much of a fixture at the school since then as her father has.
"I got my first glove when I was a newborn, probably. It was really cute," she said.
Sydney began noticing little physical quirks not long before her diagnosis. The tingling and numbness on the left side of her face. The uncontrollable drooling that resulted from that numbness. And then there were the periods of just zoning or blanking out.
Sydney noticed them more away from softball than during, but that wasn’t the case on March 27.
Rice, who played at Clay and has known Sydney for years, saw her in the batting cage before a game against Baker County.
Rice said that she couldn’t pinpoint exactly what was wrong, but Sydney looked out of sorts. Rice approached her and asked if she was OK. Sydney said that it was nothing and didn’t want to stress the team, or her dad, about it.
“'Gosh kid, your heart, I love that, but you know I’ve got to go talk to your dad about this,'” Rice told Sydney.
“So, I did," Rice said. "I went to him, told him about it, just reminded him at the end of the game, ‘Hey, just really make sure you follow up with Syd.’”
That comment stuck.
Matt and his wife, Kiersten, brought up Rice’s concerns with Sydney that night and she told her parents that she’d been experiencing odd symptoms. The following day before practice, Sydney experienced a more intense episode and that led to a trip to Orange Park Pediatrics, and then, a referral to Wolfson Children’s Hospital.
Matt said that they ran the gamut of potential things that could be wrong, from stroke to tumor to a bleed in the brain.
On March 29, an MRI found two lesions on Sydney’s brain and the Lewis family had a diagnosis.
"It got scarier and scarier as it went along. Not knowing what it was was probably the worst," Matt said. "... And then you’re sitting there and the doctor tells you it’s MS. And your whole world stops. I can’t describe it other than that. Everything just stopped. Everything kind of went to slow motion."
The softball community responded in force. At the Oakleaf-Mandarin game on March 29, players from both teams wore blue to honor Sydney. Matt said that he heard from rivals and from coaches across the region. Everyone wanted to help.
“I was doing pretty good up until that point,” Matt said of seeing photos of the teams honoring Sydney. “I was a crying fool.”
Sydney’s response was typical for her personality, Matt said.
She was ready to fight the disease head-on. Sydney began initial treatment on March 29 and will start her next phase of it this month at Mayo Clinic. Tests revealed that the lesions were confined to her brain and weren’t in other parts of her central nervous system.
"Doctor comes in and [the] neurologist tells her what it is," Matt said. "She goes OK. Well I’m not dying. It’s not a brain bleed. It’s not a tumor. Didn’t have a stroke. I got it. We can fix this thing. We can go on with life. And that’s been her attitude."
Sydney isn’t quite done with softball yet, either. The Blue Devils, who reached the state semifinals last season, have at least two more weeks of softball left and Sydney plans on being part of it.
She was cleared by her doctors to return to practice on April 8 and Clay has won its three games since then, including a 17-0 win over Menendez on April 11. Sydney had her first hit since returning to the field in that game and drove in a pair of runs.
“They said I was very, very lucky that I had such good coaches and people that knew about me and knew how I normally act and stuff,” she said. “They were happy we were able to catch it quickly before the symptoms started to progress and get worse.”
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