Rare seizure disorder affects athlete's life

It’s not hard to miss Max Freer at a Champion basketball game. He dresses like a coach, yells like a fan and cheers on the Golden Flashes like a teammate. But unlike other seniors on the team, he performs the role of all but one — player.

In 2002, after suffering chronic seizures for a year-and-a-half, Freer was diagnosed with Rasmussen’s Encephalitis, a rare disorder of the central nervous system that inflames one side of the brain. For Freer it was his left side. The severity of the disorder leaves only one suggested treatment: a hemispherectomy. In laymen’s terms, the 11-year-old had to have the entire left side of his brain removed.

Until 2000, Freer was a normal, fully functioning fifth-grade student. He was involved in soccer, baseball, basketball and played percussion in the school band. In November of that year, he suffered his first seizure. By August of 2001, the seizures and the medication increased. Freer was now suffering a seizure a day and was pulled out of Champion Middle School to be home schooled.

By April of 2002, he was having as many as 20 seizures per day. At this point, his parents, Scott and Debbie, took him to the Cleveland Clinic where he was diagnosed. In May, the Freers flew to Johns Hopkins Hospital in Baltimore, where the disease was confirmed. Neurologist Holly D. Maggiano M.D., said once the seizures reached this level, surgery is the only course of treatment.

“When the seizures begin, we try meds first, but with Rasmussen’s, they continue and the inflammation of the brain will infect the motor strip of whichever side of the brain is infected,” Maggiano said. “The patient will develop weakness if the seizures keep occurring and the patient will essentially have stroke-like symptoms, if the seizures continue. The surgery is a last resort. It’s not a common surgery.”At the time of Max’s surgery, he was only the 112th patient in the history of Johns Hopkins to have the procedure done.

With the removal of the left side, Max lost the ability to do many day-to-day things. The left side of the brain controls the right side of the body as far as strength sensation, the right side of the visual field and many analytical skills. Because of this motor-skill loss, Max can’t use his right hand and drags his right leg when walking. But the biggest loss for Max was language. His mother said during rehabilitation he had to start from scratch.

“He had to learn how to walk, how to sit, how to hold a fork, pretty much everything,” Debbie Freer said. “And he had to relearn how to speak. He had to relearn his ABC’s. The language was the biggest thing. He now talks in phrases, not full complete sentences.” Max’s speech will probably be impaired for the rest of his life. Sentences containing 10 words, Max will say in four or five.

LOOKING OUT FOR A FRIEND

Only four months after his surgery, Max headed back to school for two days a week. By his eighth-grade year, he was back full time. For Sean Sumner, a lifelong friend and classmate of Freer’s, the hardest part was seeing his friend and not being able to do more. “I knew him when he was ‘normal’ and I knew how hard it was going to be,” Sumner said.

“When he first got sick, the teachers pulled me aside and told me about everything and asked me to watch over him. I wasn’t scared when he was having the seizures. But I watched over him. I felt it was my responsibility as a friend to take care of him. At first, after he had the surgery, he couldn’t even pick up a fork. It hurt my feelings that I couldn’t help him.”Once back at school, Max was placed in a special education program.

Because they had home-schooled their son for two years, they decided to allow him to advance with his class. And letting their son stay with his classmates was good advice.“One of the benefits of living in a small town is that we knew a lot of people and people knew Max so putting him back in school was not as hard,” Debbie Freer said.

“The support system said it wouldn’t be advantageous to keep him back with a new group of kids. They said ‘let him go, let him stay with his group.’ And probably that was the best piece of advice we got was letting him move up with everybody else.”BACK ON THE FLOORBesides re-learning day-to-day functions Max also returned to athletics, though not in the form he would have before his surgery.

In his eighth grade year, Max was given a jersey on the basketball team, but because of the limited motor skills, he didn’t see much playing time. But that didn’t hinder former coach Todd Gibson. “My dad (Champion football coach John Gibson) had coached his dad and I knew through the kids about Max,’’ Gibson said. “At some point, I talked to his dad and he asked if he could be around the guys. I had to make cuts for the team, but Max was just such a fun kid to have around, so we kept him around.”

Though Max only got in one game that year, the very last, that didn’t stop him from coming to every team practice and showing off his skills, with only the use of his left hand. “I think he got in the game one time, and unfortunately we were getting beat by a lot,” Gibson said. “In practice, he would shoot around while we were practicing.

Everyday he and I would have a 3-point shooting contest. He usually beat me, and he was only using his left hand. I don’t know what that says about my skills, but it does say something about his!”Even today, Champion varsity basketball coach Dan Bubon and teammates said Max is probably the best shooter on the team. He showed those shooting skills his freshman year when he scored his first, and only, basket in high school.

Teammate Markel Vaughn remembers it like it was yesterday, because he said Max talks about it on a daily basis. “Ninth grade, he actually played. We would put him in at the end because we won a lot of our freshman games,” Vaughn recounted. “I remember, we threw it to him and he shot it in. It was about an 18-footer and it was at the buzzer against Hubbard. That was pretty exciting.”Max said it wasn’t as easy as Vaughn made it sound. “I first dribbled, then I cut, and around. Then shot and whoosh!,” he said.

His mother is quick to point out the vivid memory wasn’t as easy as the now 18-year old made it sound. “One time I air balled,” Max admitted with a smile. So what started as getting a jersey in eighth grade has grown into him being a permanent fixture on the sideline. Being against more physical athletes at the varsity level, it was impossible for coaches to give him a spot on the roster. But, he still had a place on the football and basketball teams as a manager. But as John Gibson said, Max is much more than a manager.

“Because he has such athletic ability, we never really wanted to put that ‘tag’ of a manager on him,” John Gibson said. “He was an associate coach and he was our spirit guy. He is so intimately related to the seniors. The biggest thing was because we went through a lot of struggles in the past few years, and in some of our darkest hours, Max would come in and pick up our spirits. He was the spirit coordinator.” Being a multiple letterman on the football and basketball teams, Kris Wildman remembers those tough times.

But he said what kept his spirits up was simply looking at Max on the sideline, always with a smile on his face, always cheering them on. “It means a lot seeing him there,” Wildman said. “Because if you were in his position, would you still care that much and be that happy and supportive? You can’t get down on yourself when he’s there keeping your moral up.”Keeping the moral up is just one of the many things Bubon said Max brings to the team.

“He’s got tremendous energy,” Bubon said. “He’s real close with the seniors, especially Kris, Markel, Joe and Sean. Those four would go nuts if he weren’t around. And obviously, the younger kids get accustomed to his energy. Sometimes it’s a bit too much, but it wouldn’t be the same without him.”Thinking about football or basketball season without Max is absurd to Vaughn. “He’s so out of control and pumping everybody up,” Vaughn said.

“The thing is with Max, he is a member of the team. During the Lakeview football game, he’s out there crying with us after we lost. He cares about all of us. The last game of the football season, he was crying with us because it was his last game too. He means so much to all of us. I couldn’t see football or basketball without him.”And Max couldn’t imagine it either. He likes being a part of the team and on the bench cheering on his teammates. He’s at every practice, every game and every team function. Before each game, he’s out on the court with them, pumping up his team because, as he said, “They’re my boys.”

But one game this season, his love of Champion basketball was challenged with his other love, the Duke Blue Devils. “Max said he wasn’t coming to one of our games because the Duke game was on,” teammate Joe Cvengros said. “I told him he would have to tape it because he couldn’t miss our game. He’s a Duke fanatic. He can’t go a day without saying something about Duke.”Max taped the game because as he said, “Champion is forever.”

Max is prepared to graduate in May with the rest of his classmates. Following graduation, he and his parents said he will attend the Trumbull Career and Technical Center to study an undecided trade. He’ll miss being on the bench and sidelines during Champion games, but is excited to sit in the stands as a fan and cheer on the Flashes. But if he ever wants to sit in his old chair on the bench, Bubon said he’ll save it for him. “We’ll miss him next year,” Bubon said. “He has an open invitation to be our assistant coach whenever he wants to be.”