Rare Seizure Disorder Doesn’t Stop Nellie Stuart
Nellie Stuart, 11, has Rasmussen’s Encephalitis, a neurological disease that can cause frequent seizures
Nellie Stuart is bouncing through life with toughness and a smile.
Tall for her age at 11 years old, Nellie said she is excited about going into seventh grade at Riverdale Middle School in Port Byron this fall.
She is active and athletic. She participates in cheerleading, likes art and working outside. She recently earned a bronze medal in the 50-meter dash and silver in the softball throw in the Special Olympics state track and field meet.
She is excited about an adaptive tricycle given to her by Ambucs, Mississippi Bend Trykes and Community Fellowship Church of Blue Grass. The tricycle allows Nellie to ride with her family.
“Pretty amazing for a girl having half a brain,’’ Nellie’s mother, Nikki says.
That should not be taken that the wrong way. Saying someone has “half a brain’’ is usually considered to be a cruel reference to someone’s intellect, but Nikki isn’t reacting to her tween’s personality.
Nellie Stuart, since she was 3 1/2 years old, has quite literally had half a brain.
Portions of the right hemisphere of her brain were removed in a radical hemispherectomy to treat Rasmussen’s Encephalitis on Nov. 30, 2007 at St. Louis Children’s Hospital. The portions of the right side of her brain that were not removed were disconnected permanently from her body.
Rasmussen’s Encephalitis is a rare chronic inflammatory neurological disease characterized by frequent and severe seizures, according to the National Institute of Neurological Disorders and Stroke.
Without the radical surgery, Nellie would have continued to suffer constant seizures. She also would have possibly experienced a number of life-changing symptoms of the inflammation, including weakness on one side of the body, loss of vision, and intensifying cognitive and learning disabilities. One risk is that the inflammation can spread to the healthy hemisphere, causing deterioration of brain function, life-long impairment and possibly death.
Twice a week Nellie works closely with the staff at the Genesis Outpatient Pediatric Therapy Center in Bettendorf. Nellie receives physical therapy from Kimberly Nielsen, occupational therapy from Erica Jansen, and speech therapy from Katie Leamy.
Jansen said Nellie’s goals are to utilize, strengthen and coordinate the left side of her brain further; to use her arm and leg to maximize her independence, and to continue learning self-care, play, academics and social functions.
“She considers the therapists to be part of her family,’’ Nikki Stuart says. “She continues to make progress and has since she has been coming here.’’
Following the surgery in 2007, Nellie had to relearn everything she had already learned, including walking and talking. She lost the ability to speak in a voice others could understand. Her mother describes Nellie as being “almost lifeless’’ following the surgery.
Because the surgery was on the right hemisphere of her brain, Nellie’s physical challenges are more pronounced on the left side of her body.
Nellie’s journey with Rasmussen’s Encephalitis began on the lap of her grandmother before a day at preschool. She had her first seizure but still went to preschool that morning.
The next day she had two seizures. The following day it was three. Soon they were occurring many times each day.
“Within a week, the seizures on her left side became nearly constant,’’ Nikki said.
Nellie lost the use of her left hand and most of her left leg, making it very difficult for her to move.
Rasmussen’s Encephalitis is so rare that diagnosis can be difficult. Conway Chin, D.O., medical director of Genesis Physical Medicine and Rehabilitation, said he has only seen two cases in 16 years of practice.
“Nellie had great doctors who recognized her condition and suggested the surgery to treat her for the long-term,’’ said Nikki. “She has advanced a lot with the help of the people at Genesis. She has grown up with the therapists here.
“We love it here. Without their love and dedication to helping Nellie, she would not be as far as she has progressed. What the therapists at Genesis have done with Nellie is remarkable.’’
At Genesis Outpatient Pediatric Therapy, often referred to as GOPEDS, Nellie works on a lot of different tasks.
Asked what she is working on in speech therapy, Nellie reported “sarcasm.’’
She was not being sarcastic.
“Nellie doesn’t always understand sarcasm. She takes things you tell her at face value,’’ Nikki said.
Additional goals for Nellie will be to continue to advance toward a high school diploma – she has both special needs and mainstream classes – and eventually an independent life as an adult.
“She can have a bright future considering everything she has gone through,’’ Dr. Chin said. “Her effort puts the rest of us to shame, and she is still young enough to make a lot more progress.’’
Nellie has her own goals and has advice for those who have similar challenges.
“You have dreams and you never quit going after them. Never quit,’’ she said.
“The Lord gave Nellie a happy heart and a joyful spirit, and she faces everything in her life with a smile,’’ Nikki Stuart said. “Most of the things Nellie does throughout her day take so much extra work and effort for her, but Nellie faces it all with determination and a smile.
“She has bad days like we all do, but for the most part she shakes it off and just keeps working hard.’’
Learn more about the inspiring work of Genesis Outpatient Pediatric Therapy.