Brennan Lewis is just like most 8-year-old boys in that he loves to play sports, especially baseball and basketball. He can be somewhat stubborn when his mom says it’s time to take a break, and occasionally he’ll come off the field or court a little banged up from playing his heart out. What makes Brennan unique compared to most 8-year-old boys is the one-of-a-kind skin he’s in – and the support of an exceptional baseball team.
Since his birth on Sept. 15, 2005, Brennan has had a genetic skin disorder called ichthyosis, characterized by dry, scaling skin that may be thickened or very thin. Though normally passed on through the parents, Brennan’s ichthyosis was actually caused by a spontaneous gene mutation.
“I always tell him how special he is, I try to get him to understand this is very, very rare,” said Denise Lewis, his mother. “There are mild forms and there are very severe forms, and he’s more of the severe form but not to the extent that I’ve seen some. So I guess we’re blessed in a couple different ways for that reason.”
Ichthyosis stems from the Greek word for “fish,” representative of the thick and sometimes scaly skin that accompanies those with the disease. Lewis explained even though Brennan’s skin is thick, it is still extra sensitive and tends to “rip” when he falls, though he doesn’t bleed often. He can also blister with even the slightest friction.
“You talk about shoes, socks, and clothing – diapers were awful,” she said. “He was a blistered mess the first two years of his life.”
When the blisters pop, it offers some relief to Brennan but the sores have to be bandaged to prevent infection. Ichthyosis also prevents Brennan from sweating, so on hot days he battles the heat with cooling towels around his neck, frequent breaks to sit in the air conditioning, and a spray bottle to spray himself from head to toe.
Still, even through his challenges Brennan has been playing sports since he was four years old, taking after his older brother.
“At four years old, he was raring to go,” said Lewis. “He’s fast, he’s athletic, and so I don’t want to hold him back. We’ll do everything we can to make sure he’s able to do what he likes to do.”
This year, Brennan has put that athletic skill to good use as part of the Shelby Blackfork Bombers 8U baseball team. The boys have had a great season, even winning the 2014 Wooster Clash of the Titans Baseball Tournament the last weekend of June. But even more special than their wins and losses has been the way the team rallies around their unique teammate.
In May, officially Ichthyosis Awareness Month, Lewis was preparing for her family’s annual awareness activity when Brennan’s teacher suggested this year they get t-shirts.
“We were just going to do shirts for everyone in his classroom but thought wait a minute, we’ve got to do his whole team,” Lewis remembered. “So I asked his coach and he said perfect, I want every single one of them to order one.”
Brennan’s baseball coach Marc Hartz decided to take the t-shirt idea one step further.
“I said why don’t we put numbers on them and wear them to one of the games in support of Brennan,” said Hartz. “We asked the kids if they wanted to do it and of course they did, they’re really supportive of Brennan.”
Many parents and siblings decided to join in supporting Brennan, and one weekend in May the entire team surprised Brennan by wearing his shirt during a double-header. Hartz said probably 50 or 60 people were all wearing the neon green shirts with the message “Be Super in the Skin You’re In,” accompanied of course by the image of a superhero.
When asked what he thought about the surprise t-shirts, a shy Brennan grinned and said simply, “good.”
“Some of them know a little bit more about the trials he has to go through, but they really support them,” said Hartz. “I’m very fortunate, we have a great group of boys, and they’re just fantastic kids. I don’t know if every team would do something like that.”
Both Hartz and Lewis agreed everyone on the team looks out for Brennan, whether it’s making sure he doesn’t get too hot or showing grave concern any time he sustains an injury. Still, what Lewis appreciates the most is the fact that for the most part, Brennan’s teammates and coaches treat him like any other 8-year-old boy.
“I don’t want them to make a huge fuss over him and make him feel like he’s different, but they do it just enough that they need to,” she said. “He’s just like another teammate; he still has to do what everybody else does. He doesn’t feel different because he gets special treatment. I love that.”
“Some of them know a little bit more about the trials he has to go through, but they really support them,” said Hartz. “I’m very fortunate, we have a great group of boys, and they’re just fantastic kids. I don’t know if every team would do something like that.”
