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by Christina Echegaray | Thursday, Jun. 6, 2013, 8:40 AM
Robby Novak has become known to the world as ‘Kid President,’ an online YouTube sensation spreading a message about how people can “make the world more awesome.”
In videos, he wears a signature black suit and red tie, looking very presidential. But take away the president from Kid President, and he’s just a typical 9-year-old “kid” – who also happens to have a rare brittle bone disease known as osteogenesis imperfecta (OI). Basically, he breaks easily.
Osteogenesis imperfecta, a lifelong, chronic condition, affects between 25,000 and 50,000 adults and children in the United States. It’s a rare genetic bone disease characterized by a lack of normal collagen needed to form strong bones. The result is frequent bone fractures, sometimes for no apparent reason. There are different degrees of OI, ranging from a neonatal type, often fatal, to a very mild type that can be underdiagnosed.
On a recent visit to the Monroe Carell Jr. Children’s Hospital at Vanderbilt, Robby wears a yellow plaid shirt, blue jeans and black and neon green sneakers. He’s not there to entertain (though entertaining he is) or to offer up one of his Kid Presidentisms like “I’m not IN a party, I AM a party,” referring to adults and politics. He’s there, as he is every couple months, as a patient for an infusion of medicine — pamidronate or bisphosphate — that takes five hours to make his bones stronger.
Jill Simmons, M.D., a pediatric endocrinologist at Children’s Hospital, sees about 40 pediatric patients who have OI, frequently coordinating their orthopaedic care with Gregory Mencio, M.D., director of Pediatric Orthopaedics.
“What Robby and others with this condition cannot do is form normal bone,” said Simmons. “We can’t make them form normal bone because we can’t change their genetic makeup. What we can do is make them have more of the bone that they can make. The bisphosphonate infusions are preventing the breakdown of the bone so that they lay down new bone on top of existing bone. The infusions do a great job of reducing fractures and bone pain.”
The medical community that treats OI is small. More than a dozen states don’t have clinics or doctors equipped, or willing, to handle these patients. As a result, children from all over — Mississippi, Alabama, Kentucky, Ohio, Missouri and beyond — travel to Nashville to receive their care at Children’s Hospital, which will begin infusions right after birth.
In Robby’s clinic room, he’s flanked by the latest GI Joe Snake Eyes action figure, his iPad, handheld video games and his sidekick and best friend Alexia “Lexi” Novak, his sister. Lexi, 10, also has OI.
A variety of symptoms and conditions can also accompany OI, including hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae of the eye, brittle teeth, short stature and body aches. Effects on heart and lung function aren’t fully understood yet and are the subjects of studies.
The Novak children have been patients at Children’s Hospital since 2004, receiving pamidronate infusions about every 13 weeks to decrease the breakdown of their bone, increase bone density and alleviate the pain they sometimes endure.
Robby has had more than 70 bone breaks, while Lexi has endured more than 80 and 14 surgeries. But they’ve never stopped being children.
“The children we see who have OI have such tremendously wonderful attitudes in spite of a history of a lot of pain and fear in their lives,” said Simmons.
Laurie and David Novak, Robby and Lexi’s adoptive parents, have been caring for the siblings since Lexi was 17 months old and Robby was 2 months old. They also raised three biological children, now grown. They have never held Lexi or Robby back from doing what they love and experiencing life.
“We let our kids be kids,” said Laurie Novak. “Even though it’s scary, we try not to be overprotective. They can’t become well-rounded if they are right next to you all the time. Let them be as independent and as typical kids as possible. We try not to say ‘no.’”
They have positive attitudes and aren’t afraid to try new things.
On a recent weekend, Robby and Lexi were riding their bikes side-by-side and crashed into one another. Lexi suffered a broken leg, whereas a child who does not have OI may have only experienced a scrape or two. Less than 24 hours after surgery, Lexi was out of the hospital, playing singer Adele’s music, which she learned by just listening. She’s also a dancer, and she says she’ll get back on a bike.
Robby, meanwhile, has wowed the world with his weekly Kid President segments, including his “Pep Talk” video which has garnered more than 23 million views online. He created Kid President with his brother-in-law, Brad Montague, also his best friend. His resilient spirit shines through and is contagious.
Robby tells people, “if we’re on the same team, let’s start acting like it” and “if it doesn’t make the world better, don’t do it.” He doesn’t talk about his OI in Kid President because it’s not about him. Instead, he seeks to inspire others, particularly adults, to be better. “Keep doing what you’re doing” and “make the world better” are a couple of his favorite messages to spread, he says.
When he grows up, Robby says he would like to be a U.S. Marine so he “can save the world.” But at the end of the day, Robby just likes to dance and, as he tells people, “give somebody a reason to dance.”
Christina Echegaray, (615) 322-4747
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