The girl with half a brain. That's how people have always described Brandi Binder. She doesn't really mind, because it's the truth.
She's 22, and she knows she's lucky to be alive. When she was 4, she somehow contracted a rare and extreme form of epilepsy that, by all accounts, should have killed her.
Her medical condition could have been something out of a Hollywood script. … And, in fact, it became one in an episode of "Grey's Anatomy."
Like Brandi, the fictional little girl in "Grey's Anatomy" has a condition called Rasmussen's encephalitis. Essentially, half of the brain is healthy and functions normally. The other half is dead or dying.
Brandi and her family watched the "Grey's Anatomy" episode depicting the rare condition.
"Seeing that family get that diagnosis just reminded me of when we stood before our neurologist, and we got that diagnosis," said Binder's mom, Cindy Binder.
Cindy and her husband, Steven Binder, were devastated when they heard the news, and they said watching the fictional account of their daughter's condition brought back all of the initial feelings.
"It's just as fresh watching that as the day it happened. It doesn't matter that it's been 16, 18 years since that happened to us. To see it portrayed like that was very emotional," Cindy said.
A Treatment as Daunting as the Diagnosis
"20/20" first reported on Brandi Binder and her family in 1997. When she was born, the family thought it had a normal, healthy baby. Then came the eye twitching, teeth grinding, drooling and powerful seizures. Binder was having up to 200 seizures a day.
They went to doctors around the country. Finally, one doctor at UCLA got it right and diagnosed her with Rasmussen's encephalitis. It usually affects just one side of the brain -- in this case, Binder's right side.
With the diagnosis came an agonizing decision for her parents. Treatment for the condition was the removal of half of the brain. If they didn't operate, Binder would die, doctors said. Operate, and she would be paralyzed along her left side, which the right brain controls.
They had no idea whether Binder would ever walk again, no idea how, or whether, the rest of her brain -- the left side -- would fully develop. They didn't know whether she'd ever be creative or solve problems, because that part of her brain would be removed.
Recovery would not be easy, but the Binders took one doctor's advice to heart: Challenge their daughter, every day, all the time.
They did, and it paid off. Months after her surgery, Binder started walking again. Even more remarkable, her young brain was able to make new connections -- allowing the left side to take over the functions from the missing right side. Slowly but surely, she began catching up at school.
Binder was 13 when "20/20" first met her. Like other kids, she dreamed back then of a bright future and even an independent life.
Today, nine years later, she still lives with her family, including her younger sister, Ginger. She likely always will. She remains paralyzed on her left side, her vision is impaired, and she's very much aware that people see her differently.
Binder, though, remains as strong and determined as she was during her teens. "I just go on living my life like anybody else, you know, 'cause we all have disabilities in some way. I try the best I can do, despite my limitations," she said.
The best she can do is amazing. Three years ago, she graduated from high school with honors. It was a moment that had her parents bursting with pride.
"I cried buckets of tears. We beamed as parents. Oh, I just wanted to jump up and shout out to the world! Hey, a child with half of her brain made it! It was our greatest accomplishment," Cindy said.
Something else remarkable happened to Binder. She became something of an artist. One of her drawings was temporarily displayed in the Capitol.
Her artistic talent is particularly surprising, because doctors removed the part of her brain associated with creativity.
Binder's parents tried to help her in areas where they knew she'd struggle.
"Early on, after Brandi's surgery, we exposed her to the very things the doctor said that she would never be able to do. And by that, I mean they said she'd never do art. We enrolled her in art lessons. And over the years we saw her develop a love for art. … It just astonishes me what the human brain is capable of," Cindy said.
And so a girl with the creative side of her brain removed is now creative. She's developing a Web site with her sister that will not only document her incredible story but also display and sell her art. (You can check out Brandi's Web site here: www.brandibinder.com.)
Binder has come a long way, but she is not free of seizures. She may never be. Her seizures are relatively minor, but she still has them five to 20 times a day, each lasting up to 30 seconds at a time.
To control her seizures, she takes medications and sees a neurologist regularly.
Experts say she should expect to live a normal life span; they don't consider her seizures to be much of a risk.
Steve and Cindy aren't so sure. They seem to have become a bit more cautious and protective of their daughter. They worry about her falling, and so they keep her close to home.
There are now about 50 hemispherectomies, or removals of half of the brain, a year in this country. Binder's was one of the first, and "20/20's" initial report on her is often used as an educational tool in schools and hospitals.
Recently, she was invited to speak to students at a local college. It was another in a long line of proud moments for her parents, and an inspiring one for anyone who met her.
"She has just got an amazing attitude. She doesn't look at her disabilities as being disabilities. She just looks at what she can do," her mom said.