Tuesday, May 31, 2016
By Gary Housteau
Around this time a year ago Cardinal Mooney freshman Johnnie Mikos was just your average teenager finishing out his eighth grade year at St. Christine and getting ready to play some summer baseball.
All was good in Johnnie’s world.
“I was playing here [Cene Park], 14-U with Astros,” said Mikos as he began to reflect upon his past year. “I was just playing baseball and my eighth grade year was pretty fun. Life was good.”
Mikos helped lead the Astros to the league championship last summer and was an integral member of the team that competed in the 14-U World Series, in Knoxville, Tenn.
“He was a pitcher/infielder and he had a phenomenal year,” Astros Manager Steve Leslie said.
Mikos was starting to come out of his shell and he was looking forward to continuing his baseball success for Cardinal Mooney as a freshman. That’s when he made a fateful discovery.
“At the end of summer, right before school started, I kind of noticed a spot of hair missing on the top of my head,” Mikos said. “It wasn’t that noticeable but then things just got worse during school. And by the end of basketball season I didn’t have any hair.”
Initially he didn’t know how to react.
“I was kind of nervous because I didn’t know what was going on,” Mikos said. “My parents noticed.”
And right away they became involved.
“They looked it up and said, ‘There’s this disease,’ they found out all about it,” Mikos said. “I was just like, ‘Maybe it will grow back — maybe it’s just one spot.’ But it didn’t.”
They went to the doctor immediately. The diagnosis was alopecia.
“I got these shots to try to help,” Mikos said. “But they didn’t work, really.”
Alopecia is a disease that causes hair loss when a person’s immune system attacks hair follicles, whether it’s the head or the rest of the body. Johnnie has the rarest form of the three types of alopecia.
“The version which Johnnie has, alopecia universalis, is the most rare. That’s hair loss over your entire body,” said his mother, Nancy. “It’s an autoimmune disease and with any autoimmune disease they don’t know a whole lot about it because it’s your body attacking itself. There’s some evidence that it’s hereditary but there’s nothing on either side of the family. It’s just very random.
“I was pretty upset,” Johnnie said. “I was sad. I didn’t know what to think, actually. I thought it was just going to be that spot. But it wasn’t.”
He tried to move forward with his day-to-day life, but it was difficult.
“At first I didn’t really think about it,” Mikos said. “But it got a little worse and then it got kind of hard to focus on things.”
The basketball team at Mooney was a big help for him during that hair-losing time.
“It kind of helped that I played basketball because my mom told the coach about it and then he told the basketball team,” Mikos said. “I think they helped tell others, so I didn’t have to tell everyone.”
It was a little awkward for Mikos at first.
“You could kind of tell that people were looking,” he said. “I tried not to let it bother me.”
That’s around the time his father, John, stepped up in a big way.
“Back in December when Johnnie’s hair was falling out rapidly and we were watching him go through the worst experience of his life, I told myself, ‘I’m not going to let him be the only person in the house without hair,’” John Mikos said. “So I shaved my head.”
John’s head is still shaved today.
“I hope it helps him cope and realize the support he has around him,” the elder Mikos said. “And it helps teach him to walk tall and proud always.”
Johnnie’s mother has also been very instrumental during the entire process.
“This has been the most difficult thing I’ve ever experienced,” Nancy Mikos said. “Watching your kid go through anything and not being able to have any control over it is the hardest thing in the world.”
But her world has been getting better of late.
“There was a long time when I cried every single day — every day,” Nancy said. “I still cry, but not as often. It’s gotten a little bit easier. I think he’s accepted it a little bit more so that makes it a little bit easier for us. But probably not a week goes by that I don’t cry over it.”
Knowledge, admittedly, has helped her.
“My husband and I are very educated on this,” she said. “We’ve read a lot of articles, been to a lot of doctors and hopefully we can at least become advocates for alopecia awareness so we can maybe help somebody else or maybe someday find a cure.”
The disease obviously did nothing to hamper Johnnie’s progress for Cardinal Mooney this season. Mikos worked six shutout innings of relief to get a win over Lakewood St. Edward in the Catholic School Tournament. He also pitched well in six innings in a 3-2 season-ending loss to defending state champion Canton Central Catholic in a Division III district final on May 17.
“I’ve never been so proud,” a teary-eyed Nancy Mikos said with a smile as she looked at her son. “If we would have won, I would have been much happier, but there’s no way I would have been more proud of him. He did outstanding. I know this was his goal, to play varsity as a freshman, and I’m proud of him for meeting that goal.”
The success Johnnie had this season had a profound affect on the entire Mikos family.
“I think it helps him, which helps us as a family,” Nancy said. “I think we’ve had more smiles in the past week than tears. I feel like we’re at a point where it is what it is and we have to just keep moving along without ever giving up hope that [his hair] can come back, because we’re never going to give up that hope.”
According to Nancy, Johnnie’s resolve has been strong throughout the whole ordeal.
“He’s been awesome,” Nancy Mikos said. “Being at Cardinal Mooney has been amazing for him. There’s no other school I’d rather him be at. His friends, his teachers and the administration have been nothing but supportive of him. The fact that he’s comfortable and that’s one of his safe places means the world to me.”
Johnnie, who won’t turn 16 until February, has a 13-year-old brother. Brandon Mikos is in seventh grade at St. Christine. Nancy says Brandon is Johnnie’s biggest fan.
“I get concerned for [Brandon] because I worry that he worries about it, but I can’t do anything about it. There’s nothing to prevent it from happening if it would happen,” she said. “I just worry about him worrying about that. That’s all. But I’m a proud mom. A very proud mom.”
Mooney baseball coach Al Franceschelli also is proud of Mikos. His accomplishments as a freshman pitcher, according to Franceschelli, are remarkable regardless of the circumstances.
“He had a breakout season,” the coach said. “Of course, our kids were really, really good. They never, ever gave him any incidents. They were supportive of him 100 percent. At the beginning I was worried about him — how he would react coming into a new environment. I watched him close but I never had to say anything to him or his teammates because they just were very mature about it. They knew that he had a condition and they supported him 100 percent. He’s such a good kid and a phenomenal baseball player.”
Franceschelli didn’t try to treat Johnnie any differently than the other players.
“I think at first he was a typical freshman,” Franceschelli said of Mikos’ approach to pitching. “But once I started talking to him — ‘You got to be tough, you got to want to get this more than anything else, you got to beat the guy’ — he stood right up to the challenge. At times, if his hat blew off, sometimes I could see he’d look around but it didn’t affect his performance. He toughened up. I’m proud of him.”
In a strange way, Mikos has helped to make people aware of alopecia because of the stellar way he performed on the mound as a freshman.
“It feels good,” he said. “I’m comfortable talking about it, but I’m just a kid playing baseball. The high school season was a lot of fun.”
He just wants to forget about alopecia and have fun playing baseball. He’s put it behind him now.
“It’s rough, but you can’t worry about it,” Mikos said. “I’ve accepted it. I don’t think about it as much as I used to. I just go on. I try not to think about it because then, I don’t know, it’s just better when you don’t think about it.”
Mikos recorded good grades at Mooney as a freshman and has big dreams just like any other young athlete.
“Hopefully I’ll play for a big college and if I work hard enough there, maybe I’ll make it to the pros,” he said. “That would be the best.”
Those close to him say Mikos has a lot going for him at such a young age.
“He is one of my favorite kids I’ve ever coached,” Leslie said. “He works very hard and he’s mentally a strong kid. With this disease, that just proves to me the type of kid that he is to want to get this out and let people understand what type of disease this is. I think, from my end of it, that just shows me what a phenomenal kid he is.
“For a 15-year-old kid that’s a freshman in high school to have to deal with this on a daily basis, he really needs to be commended for his efforts in promoting this.”
Mikos seems to have conquered the worst aspect of the disease.
“I know it’s rough, but you take it day-to-day,” he said. “Every once in a while, if you think of something it gets a little rough — like how you remember having the hair, that’s a little rough. It might come back, but that doesn’t really matter, I guess.
“Once in a while it gets to me, it bothers me a little bit, but usually I just don’t really care. You just got to forget about it and say, ‘So what? I’m not going to let it bother me and I don’t care what other people think.’ Everybody important already knows.”