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Mackenzie's story

mackenzie

view Mackenzie's video (WTAJ)

   
Mackenzie has had intractable seizures since she was 3 years old, so it was no surprise to her parents when she was still having an average of 20 seizures a month at age 8.  What did surprise them was when the seizures became more intense and consistent; the young girl suddenly was having between 100 and 200 episodes every day.

No medication or combination of medications helped, nor did the implantation of a Vagus Nerve Stimulator (VNS), a device similar to a pacemaker that sends electric impulses to the brain. 

“The seizures were every five to 20 minutes,” remembers Mackenzie’s dad, Harry.  Between them and the additional medications, Mackenzie was barely functioning.  “Wherever you put her is where she would be for that day.”

“The poor thing couldn’t even eat.  When we tried to feed her or give her medication, she would have a seizure,” says Mackenzie’s mom, Tracy.  She lost a lot of weight and muscle tone. 

With almost all options exhausted, Janet Weis Children’s Hospital neurologist Jill Gotoff, MD, medically induced a coma to try to give Mackenzie’s brain a chance to rest.  As soon as the medications were lessened, however, Mackenzie’s seizures returned.

“Because we strongly suspected that Mackenzie’s seizures were coming from an abnormal formation in the brain, we knew it was unlikely they would go away without more drastic measures,” explains Dr. Gotoff.

The only option left was brain surgery.  There were risks, including possibly damaging Mackenzie’s vision, but the family was out of options and there really was no time left to think. It was the last alternative, and it was necessary.

A preliminary surgery allowed 127 electrodes to be placed on her brain to find the location of the problem, and the surgery to remove a part of her brain followed.

It was a long morning in the waiting room, Harry remembers, but when Dr. Gotoff arrived, she was smiling.  Mackenzie was not even out of recovery, the doctor had said, and was going down the hallway, waving and smiling at everybody as she went back to her room.

After some additional medication adjustments, Mackenzie’s seizures lessened significantly – to the point where she has become almost seizure-free. Today, she’s an active girl who loves to go to the family’s camp, enjoys playing computer games and wants to be a “pet doctor” when she grows up.

“She’s a completely different child now,” Tracy says, noting her improvements physically and mentally.

“As much as she’s been put through, she has always been content.  She’s tough,” Harry adds.  “She has come a long way.”

Children’s Miracle Network at Geisinger has provided funds for neurology testing and monitoring equipment, which helps doctors to diagnose and treat children like Mackenzie. The organization also has funded comfort items that would have benefited Mackenzie and her family, such as the televisions, DVD players and recliners that are in each inpatient room.

Meet Mackenzie: 2010 Miracle Kid

When Mackenzie's seizures increased beyond control, the only option was brain surgery. Now this youngster is making the most of every day.