Ellensburg seventh-grader Brenden Adams has an abnormality of the 12th chromosome that's caused his bones, teeth and organs to grow at a phenomenal pace. Three weeks after having his spleen removed at Seattle Children's hospital, Brenden — who is 7-foot-3 and turned 13 Saturday — flew to Chicago to meet talk-show queen Oprah Winfrey and...
Brenden Adams hasn’t grown any taller since February, but that doesn’t mean back-to-school shopping has gotten easier for the Ellensburg seventh-grader.
Brenden’s mom, Debbie Ezell, is still wrangling with her insurance company over its refusal to cover the cost of $800 orthopedic shoes, though she finally found a way to order custom-made blue jeans — at $150 a pair — for her 7-foot-3 son, who turned 13 on Saturday.
But Brenden hopes he could soon be receiving hand-me-downs from the likes of NBA great Shaquille O’Neal once TV talk show queen Oprah Winfrey introduces Brenden to millions of her viewers.
Brenden, his mom, dad and stepmother flew to Chicago last Tuesday, met “America’s Doctor” — Dr. Mehmet Oz — on Wednesday and taped a segment for Winfrey’s show on Thursday.
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An air date hasn’t been set, but the rest of the country will soon learn what people in the Kittitas County farming community of Ellensburg already know: Brenden Adams is a one-of-a-kind boy.
As far as researchers know, Brenden is the only person in the world to grow so big and so quickly because of an inverted chromosome 12. It’s a little hard to explain, so we’ll get to that later.
Suffice to say, though, that Brenden’s condition — which has made his bones, teeth and organs grow at a phenomenal pace — makes it difficult for him to do regular childhood things, like play football or ride in his mom’s SUV.
Back in November, Brenden’s hometown of roughly 15,000 people raised $20,000 to help buy basics — like a bed and a desk — for Brenden’s oversize frame. Because Brenden can’t easily bend his knees or ankles, the local fire department donated a lift chair, the kind that electronically powers him into a sitting or standing position.
In January, Brenden, his mom, stepdad, two sisters and baby half-brother moved into a new house with 8-foot-high doorways — built, as his mom says, so there’s at least one place on the planet where Brenden doesn’t have to stoop to move between rooms. He’s got a new, 10-foot-long bed at his mom’s house and should be getting a similar-size bed for his dad’s house, once a local shop teacher finishes making it from donated lumber.
While Brenden’s physical comfort is improving, his medical prognosis remains uncertain. Last year, he had a dozen molars pulled and underwent an experimental treatment to speed up puberty, fuse his growth plates together and stop him from getting any taller.
It seems to have worked. But while his bones might have stopped growing, it’s unclear whether his internal organs have followed suit.
Three weeks ago, Brenden had his spleen removed at Seattle Children’s hospital. A normal adult spleen is about the size of a fist and fits snugly under the rib cage. But Brenden’s spleen was a football-size organ that extended from his chest to his pelvis.
“His spleen is actually bigger than a lot of the babies we operate on,” said Dr. John Waldhausen, who performed the two-hour surgery.
Now that his spleen is gone, Brenden has color in his cheeks, his energy is up and “for the first time, his labs came back normal,” his mother said.
When Brenden was born Sept. 20, 1995 at Kittitas Valley Community Hospital, he weighed in at 7 pounds 3 ounces and measured 19 ½ inches long — both well within the normal range for newborns.
But by the time he was 6 months old, Brenden was growing unusually fast. Though his mental development has been the same as any other kid his age, his rapid physical growth has brought on a slew of medical problems: Between ages 2 and 8, he was diagnosed with a brain tumor (it’s benign and stable), a bleeding disorder, a heart disorder and arthritis in his enlarged joints.
Still, doctors couldn’t tell Brenden’s parents why their son towered over his peers. In 2001, Brenden underwent a bone-marrow biopsy so doctors, worried Brenden might have leukemia, could study his blood-making cells, said Dr. Melissa Parisi, a medical geneticist at Children’s who first met Brenden when he was 4.
The biopsy revealed something surprising: Specialists at Children’s discovered that Brenden had a chromosomal abnormality. The biopsy was “when we first got a hint, though it took us a while to sort it out,” said Parisi, who collaborated with researchers at Harvard Medical School on a specific diagnosis.
Only 2 percent of the population has what geneticists call a balanced chromosomal inversion — that is, they have the right amount of genetic material but some of it gets rearranged when cells divide during the earliest stages of development. For the vast majority of that 2 percent, the rearrangement doesn’t alter critical genes and so there’s no physical effect.
But that’s not the case for Brenden.
For reasons no one understands, one copy of Brenden’s 12th chromosome is inverted, as if someone tore off a chunk, flipped it around and reattached it. The spot where the chromosome broke and flipped disrupted a gene — called HMGA2 — that, thanks to Brenden, geneticists now know is crucial to growth.
Since neither of his parents tested positive for the same inversion, it’s “how we know it’s de novo, or brand new, in Brenden,” said Parisi, who co-authored a 2005 article about Brenden for The American Journal of Human Genetics.
“Brenden is unique and … that’s why it’s hard for me to tell his family what to expect in the long run,” she said. “It’s gratifying to at least be able to figure out what’s going on with him, but it’s humbling — there’s still so much we don’t know.”
Mom suffers, too
For Brenden’s mom, Debbie Ezell, “not knowing if he’ll be alive in five years or if he’ll have a family of his own” is the hardest part of living with Brenden’s condition. Seeing him in pain ranks up there, too.
“He gets sick and tired of Mom asking him, ‘Brenden, are you OK?’ ” she said. “It has to be painful, but I can tell in his voice when he gets annoyed. He’s like, ‘Mom, I’ll let you know.’ He never complains. Never.”
Though he’s probably seen more doctors in his 13 years than most people see in a lifetime, Brenden — who is exceptionally proud of his six-pack abs — doesn’t think of himself as a sick kid.
He’d rather talk about paintball wars with his friends (It has to hurt a little, Brenden said, “or else it’s not fun”), the remote-control cars he races in the backyard (“They run on nitro fuel but I just broke my rear drive shaft”) or the go-cart he and his stepdad are outfitting with a snowmobile motor (“It’s a two-cylinder engine”). He loves sports and Airsoft guns and dreams of being a mechanic.
His favorite subjects in school: “Probably PE and math.”
His dream car: “a 1969 Dodge Charger.”
His take on a recent trip to Texas: “An airplane was better than a car.”
While he feigns annoyance when asked about his younger siblings and pulls away when his mom tries to kiss his cheek in public, Brenden exudes a gentle calm. He won’t admit to anyone but his mother that he sometimes feels guilty about the time and expense his condition has cost his two working-class families.
“No one has his condition in the world, but then no one in the world has his heart of gold,” Ezell said. “People are kind, people are generous, but I don’t believe there’s anyone with a heart like his.”
Sara Jean Green: 206-515-5654 or firstname.lastname@example.org