Meet Nicholas!
St.Louis, Missouri 

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Superheroes are seven-year-old Nicholas George’s thing right now. He has amassed an impressive collection of nearly 400 Marvel figurines, and can readily name each one.

“I didn’t even know there were that many,” laughs his mother. “He has a bucketful of them and is always on the search for a new one to add to his collection.” 

To his parents, Dottie and Tom, and many in the St. Louis area, Nick is a superhero as well.

Since turning three, he has become an outspoken advocate for not only OI but for all kids with disabilities.  His contagious personality has landed him both TV and radio interviews, master of ceremonies opportunities at a local children’s charity, as well as an open door invitation to ‘teach’ a class on OI to second-year medical school students.   

“He does well in the spotlight,” according to his parents.

The George family’s OI journey began like many others.  A routine ultrasound at 20-weeks revealed that their baby had short femurs and several fractures. The ultrasound visit happened to coincide with the couple’s 10-year wedding anniversary.

The doctors were uncertain what the ultrasound findings meant at the time, thinking it might be skeletal dysplasia.  Amniocentesis performed a week later also did not conclusively indicate osteogenesis imperfecta. Not until Nick was born, with fractures in one arm and leg, and several healed fractures, did the doctors conclude he had OI.  

Nick spent the next 19 days in the neonatal intensive care unit so that his medical team could manage his pain.  He fractured both his other arm and leg before coming home.

“Those were the worst of times,” recalls Dottie.  Following a skin biopsy few months later, a diagnosis of OI Type III/IV was confirmed. Ever since then, treatments for Nick's OI have become part of the family's routine. 

Nick began Pamidronate infusions at five months old.  A serious femur fracture in his left leg led to his being rodded at two, and a second F-D (Fassier-Duval) rod was placed in his right femur as a preventative measure a year later.  He continues Pamidronate treatments on a 12-week cycle, and his dosage is checked regularly to monitor his bone density due to some weakness in his spine. 

But little has thwarted Nick’s positive and adventurous spirit.

For the last several years, he has been tapped to be the MC at the annual fundraising event for Variety St. Louis, a children’s charity which provides durable medical equipment including wheelchairs, augmentative speech devices, leg braces, hearing aids, prostheses and van lifts that empower children to be physically independent. Through Variety’s fundraising events, Nick was able to have both his wheelchair and walker donated. 

“In St. Louis we’re like the local advocates for OI, and Nick is such a big part of that” said Dottie.  “He’ll just grab the microphone as people come in and steer them toward the bidding.”

Even in front of an auditorium full of medical professionals, Nick handles his himself with equal aplomb.

“He’s the first person his geneticist at Cardinal Glennon Children’s Medical Center relies on to give a real life perspective on OI when there is a class on metabolic bone disorders.  He’s so comfortable speaking and wants to show how much he enjoys life that he has everyone wrapped around his finger afterwards. We have no idea where he gets this from!”

Two weeks ago marked the third time Nick has addressed a group of approximately 150 second-year medical students and nurses at the St. Louis hospital.  

Nick excels at school as well.  He’s an ‘extremely bright’ first grader who’s currently being tested for the gifted and talented program. He enjoys math and science, and has a particular fascination with astronomy.

“His classmates have been great. They want to help him and understand how to be careful around him. With Nick having the intellectual ability, it keeps him on the same level as the other kids even though he can’t do the physical things,” says Dottie.

Nick uses both a manual and power wheelchair in school depending on his day’s activities, and is accompanied by an aide who monitors his safety both in and outside of the classroom.  He’s also learned to use a walker.

 “Last year in kindergarten he started off just doing a little portion of the hallway, maybe about 20 feet, and  that was a lot for him just to go that little bit.  But just about two weeks ago, he beat his own record by lapping the hallway over 600 feet, and that was a huge milestone for him.”

Outside of school, Nick enjoys Boy Scout activities and wheelchair dancing.  

“He goes crazy if ever we attend a wedding or an event because he’s always looking for the dance floor. He becomes the center of attention wherever he goes. He’ll have all the girls around him dancing in a circle. He’s got quite the personality.”

“As I think back on the last few years, I see how far we have come, yet I know we still have so far to go. Some days I start worrying about Nick’s future. Then I have to make myself take a step back and enjoy every day that we are having right now. I love watching Nick grow and experience all that life holds for him,” says Dottie.

With his winning personality and ease in front of the spotlight, a career in broadcasting may be in his future.  But for now, Nick is just an amazing little boy who’s considered a ‘superhero’ to those lucky enough to know him.

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