Brenden Adams towers over classmates, his parents and his teacher.
(Mary Hannan/ABC News)
"I was terrified," his father said, "and no one could ever give us an answer what the outcome would be or what the expectancy would be."
Brenden's mom agreed, "That's the worst part…not knowing."
For years, doctors continued to search for the source and an answer to Brenden's unstoppable growth. He went through multiple tests and X-rays as medical experts tried to determine what was going on inside Brenden's body.
Then, finally, a breakthrough -- when Brenden was eight years old and already the size of an adult.
"I have to say that the hematologists and oncologists here actually helped us figure it out," admits Parisi. "He has a very unusual rearrangement of his genetic material. It's what's called an inversion of chromosome-12 and it affects every single cell in his body."
Chromosomes, you may remember, come in pairs. But in Brenden's case, his 12th chromosomes don't match. Somehow -- experts still don't know why -- the middle of one of them broke off, flipped around and re-attached, disrupting a critical gene that controls growth. And that's what experts believe is causing Brenden's excessive growth and other symptoms and what makes his case the only one of its kind.
"This gene is functioning despite the regulation that it shouldn't be," said Dr. Gad Kletter, Brenden's endocrinologist at Swedish Hospital in Seattle. "It's over-functioning. He was predicted to be over eight foot tall."
Now that doctors finally figured out what was causing Brenden's skyrocketing height, they still had another mystery to solve: how to stop it? And since Brenden is believed to be the only person in the world with the condition, there was no clear-cut answer.
Then, Kletter had an idea that seemed a little crazy -- shots of testosterone to jump start puberty and speed up Brenden's growth. It's puberty, he explained, that signals the body to stop growing.
"We induced puberty," explained Kletter, "to fuse the bones and stop the growth."
And so far, the shots seem to be successful. Brenden's growth has slowed down.
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