Parade Magazine Excerpt - MaryEllen Hughes

The "drop-attacks" were the worst. At least twice a day, 10-year-old Maryellen Hughes of Philadelphia, would collapse as if a linebacker came running from behind and- boom!-knocked her flat says her father, Mark.
 
She had to wear a helmet everywhere to protect her head, and she was bruised all over. Mark and his wife wife Kathy  were terrified that she'd break a bone or that the high-voltage seizures would fry her brain and kill herMaryellen Hughes was just 13 months old when she began grimacing and shooting her arms upward on awakening.
 
Our pediatrician said it was nothing says Hughes but  they felt something was wrong.In 1993, his wife took a videotape of their daughter's odd movements to Children's Hospital of Philadelphia, where neurologists diagnosed  a severe, often fatal, form of epilepsy that was causing in the child almost continuous seizures, particularly during sleep.
 
For months, Hughes had to inject steroids into his daughter's thigh. When mild seizures persisted, Maryellen was put on a "ketogenic" diet, similar to an extremely high-fat, low-carbohydrate Atkins diet. How do you tell a 3-year-old she can't eat what you're having asks Hughes.  He says they had to  strap her down and feed her things like mayonnaise. Mark and his   wife ate dinner squeezed in their  tiny pantry with the door closed so she wouldn't see their food.
 
As months-and years-passed, Maryellen was given 20 different medicines. Some transformed their  sweet little girl from Dr. Jekyll to Mr. Hyde says Hughes. Others took away her appetite or made her sleepy. As Maryellen lagged farther behind children her age, the Hughes enrolled her in a special-education school.
 
When she was 8, doctors implanted a Vagus Nerve Stimulator,   a pocket-watch-sized device that reduces seizures in about 30% of recipients. It didn't help. When the drop attacks began three years ago says Hughes they felt so helpless and scared that many a night his wife would just cry. They  believed  we had a better chance of getting hit by lightning than of curing Maryellen.

Then the Hughes' decided to have an operation on Maryellen (called a corpus callosotomy) to sever the nerves connecting the right and left hemispheres of Maryellen's brain.
 
It's hard to think about a doctor cutting open your child's skull says Hughes,  but the seizures were spreading through her entire brain.A five-hour operation in August 2003 ended the drop attacks, but the years of severe seizures have taken a toll.
 
At 12, Maryellen functions at the level of a 9 year old.  We've seen a tremendous improvement in her mental capabilities since the surgery says her father.  Best of all, he says, her wonderful personality is back