Mystery Diagnosis: What's Wrong With Carter?

Searching for answers, mom says she knew something was wrong with her son.

ByABC News
December 1, 2010, 1:24 PM

Dec. 28, 2010— -- Friendly and playful, Carter Hearn from Lufkin, Texas, may act like a regular, happy-go-lucky little boy, but he suffers from a rare condition that sets him apart from other children. At just four years old, Carter stands at nearly four feet tall and weighs 90 pounds, just a couple inches shorter, but nearly twice as heavy, as his six-year-old sister, Kaylie.

His mother, Deena Hearn, said she first noticed her son's abnormal growth when he weighed almost 30 pounds as an infant.

"I had Kaylie's [baby] book to compare by, and I was like, I just know something is not right. He is not eating that much to be gaining that much weight," Hearn said.

Concerned about their son's health, Hearn took Carter to doctor after doctor, but she said physicians often accused her of simply over-feeding the boy and told her to "get him on a diet."

"They would just look at me, you know, asking me questions about what he ate and what he did," she said. "I actually had one endocrinologist in Houston ask me if I was sleep-walking [and] feeding him."

Hearn added that not just doctors, but other parents and even strangers remarked on Carter's large size.

"When he was in daycare, parents would comment to the workers that they needed to call the child protection services on us for what we were doing to our child, because they assumed we were over-feeding him because he was so big," Hearn said, explaining that her daughter, Kaylie, had the complete opposite body type to Carter's.

"She can eat 24/7 and not gain anything," Hearn said. "That's what I told them...if I was feeding one this way, you think the other would be this way also."

Aside from his unusual girth, Carter suffered from other health problems, including a heart murmur, difficulty breathing and bone deposits under his skin that his mother said felt like pebbles. Hearn became frustrated when none of the doctors in their hometown could figure out what was wrong with her son.

"I felt like they thought I was crazy. I felt like they were the ones supposed to be helping me and they [were] not listening. They [were] blaming me -- it was horrible," she said. "Doctors would sit there and tell me something's wrong with him but, you know, we might not ever find out what it is. I'm like, no that's not a good enough answer."