Kid President Robby Novak Cheerful In Spite Of Terrible Disease


By Victor Ochieng

Kid President is that charming child who always appears dressed like the President on television shows, films, and videos. While his personality is amazing, he is also reputed for his Youtube videos where he talks about life lessons that touch on the lives of the youth or anyone up for words of inspiration. He addresses these topics with some air of conviction and, well, as someone might say, like the President.

Knowing Robby Novak, who is now 12-years-old, off the stage provides an even more intriguing story of a young boy who has remained positive in spite of the fact that he’s suffering from Osteogenesis Imperfecta, a disease known to make bones brittle. Even with that condition, he hasn’t slowed down even a bit.

It’s alarming to know that the young “president” has had 70 broken bones and more than 10 surgeries, some in which surgeons insert steel rods into both of his legs.

“What Robby and others with this condition cannot do is form normal bone,” said Jill Simmons, M.D., a pediatric endocrinologist at Children’s Hospital. “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.”

Experts who treat the disease are rare. Simmons offers treatment for up to 40 pediatric patients. But for little Novak, he continues to spread his messages, even while at the hospital.

Novak’s younger sister, Alexia “Lexi” Novak, also suffers from OI, but it hasn’t slowed the siblings down. They’ve continued to be kids and have remained optimistic in life. Alexia has already had 80 broken bones and both have been patients at the hospital since 2004.

“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.

Their foster parents, Laurie and David Novak, have always given them the freedom to do what they love to do to ensure that they live happy lives.

“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.’”

The kids are positive and have always remained open to trying new things in their lives.

As for Mr. President, he has continued releasing YouTube videos, teaching kids and giving pep talks to adults.

In his list of tips of being awesome, he advises people that it’s okay to be discouraged, but it isn’t okay to stop. And it seems he is applying that principle to his own life as well.

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