LINCOLN PARK, Mich. – Caleb Petri of Lincoln Park, Mich., is a happy toddler who loves superheroes, playing outside and wrestling with his two big brothers.
He's a typical 2 1/2-year-old in so many ways. There's just one exception: what his parents call his "polka dots."
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"Caleb was 6 weeks old, and he had a spot that looked like a bug bite on his stomach, and we took him into the doctor," said Melanie Petri, Caleb's mother. "She at first thought it was a bug bite as well."
But the "bug bite" didn't go away, and soon more spots started to appear.
"I got a little nervous when they started popping up all over the place," said Jason Petri, Caleb's father.
"We went to the dermatologist who scratched his little belly and said, 'That's urticaria pigmentosa,'" said Melanie Petri.
Dr. Frank McGeorge said urticaria pigmentosa is a form of mastocytosis. It's a rare skin disease that causes brownish spots, intense itching and hives.
Melanie and Jason Petri had never heard of the condition.
"I went home and Googled. And Google is scary, a lot of scary things on there, so that frightened me even more," said Melanie Petri.
Urticaria pigmentosa occurs when the body has too many mast cells. Those are cells that usually help heal wounds. It's not clear what causes urticaria pigmentosa, but the disease is most often seen in young children.
"It can lead to more health problems. He's had a few stomach issues and a few bone issues," said Melanie Petri. "He has to be tested for his blood every year because it can lead to leukemia."
Urticaria pigmentosa is not contagious in any way, but unfortunately, Caleb's spots bear a passing resemblance to something that is -- chickenpox.
"The hardest part is the looks we get because he looks like a child with chickenpox," said Melanie Petri.
It's a constant problem for a family that just wants their little boy to enjoy a normal life. The Petris said even going to a restaurant is difficult.
"If we sit next to them, people ask the waitress to be moved," said Melanie Petri. "We've had an occurrence with the Easter Bunny this year where several people in line actually got in an argument with us because they thought we were bringing our child with chickenpox out to see the Easter Bunny."
Caleb is too little to realize what's happening, but the incidents are difficult for his parents and older brothers.
"The hurtful ones are the ones that just don't ask, pick up their kids and run, and he doesn't know it. He's playing with a little boy and all of a sudden that little boy's not there anymore," said Melanie Petri.
To help avoid those situations, the Petris have made special t-shirts and buttons that read "It's Not Chickenpox" and "God Made Me Polka-Dotted."
"It was hard at first," said Melanie Petri. "We didn't want him to be like a big bulletin board all the time, but it helps us to be able to go to park, go to the water park, go camping."
Caleb even wore a button on his Halloween costume.
The Petris already fear what will happen when Caleb starts school.
"I worry about him getting made fun of," said Melanie Petri. "Three years from now, he'll be out on his own. He won't have me to protect him and explain what it is. Every mom wants their little kid to be normal and well-liked and not stared at or anything, so that's incredibly hard."
There's no cure for urticaria pigmentosa. Experts said the spots often fade by puberty, but because Caleb's case is severe, doctors have told the Petris that Caleb's spots may last into his 20s.
The Petri family has found comfort in their faith, their church and others dealing with this disease that are part of the online support forum Mastokids. Jason Petri has also started a blog about Caleb titled Spots Like Raindrops.
Melanie and Jason Petri are trying to raise awareness of urticaria pigmentosa in hopes of making life easier for Caleb and other kids and adults suffering from the disease. Their message to everyone: just ask.
"He's just such a normal little kid, so happy all the time," said Jason Petri. "I definitely would rather have them ask me than stare at him or make fun of him."
"I completely understand as a parent that you may not want your child sitting next to a kid that looks like he may have something, but all you have to do is ask, and we'll be glad to tell you," said Melanie Petri.