Robot connects Louisiana girl with rare illness to classroom

marcella

By Jacob Batte, Houma Courier exclusive to WWLTV

CUT OFF, La. — An unusual student lights up and rolls out of the corner of Erica Bossier’s first grade class at South Larose Elementary School at the start of the day.

It’s a white, 3-foot tall robot with a small screen for its head and a polka-dotted, pink bow on top. On the screen is Marcella Pierce, also wearing a pink bow.

The 6-year-old can’t go to school because of a rare neurological disease. Through the robot, nicknamed Mar-2 by the class, she’s able to attend school.

It’s only by extraordinary circumstances that she’s even in class.

Heading into kindergarten at Cut Off Elementary in 2014, where her mother Amy was a teacher, Marcella was a normal 5-year-old girl.

The seventh of 10 children, and the oldest daughter, Marcella took after her brothers, who are ages 18, 13, 12, 11, 10, 8, 5 and 3. She also has a 2-year-old sister. A bit of tomboy, Marcella also likes to dance and play with dolls.

“She’s turning into one of the girls,” mom said. “She has a very bubbly personality. She’s always been very happy.”

But in September, Marcella began to complain that her neck hurt. Then she started vomiting and had a fever. Her symptoms have worsened ever since.

She was diagnosed with Acute Flaccid Myelitis, a rare virus similar to polio and West Nile Virus that affects the nerve cells in the spine. Doctors are still unsure of the cause.

Since August 2014, there have 120 cases diagnosed in 34 states of children under the age of 7 who developed a sudden onset of weakness in one or both arms or legs and MRI scans show inflammation of nerve cells in the spinal cord, according to the Center for Disease Control. Only two children have fully recovered. About 80 have shown some improvement.

Marcella, who only has complete control of her right arm and some control of her head, fits into the small improvement category, Amy said.

Marcela’s movement of her legs and left arm, her voice and her ability to get rid of mucus were just a few of the abilities the virus has cost her. She has a tube around her neck and needs a ventilator at night.

“She was a healthy 5-year old before she became ill,” Amy said. “It’s been very difficult.”

Marcella grabs her mom’s attention by banging on her detachable work desk on her wheel chair or by clicking her tongue. She communicates by mouthing or whispering words.

The virus has also weakened Marcella’s immune system. That’s the primary reason Amy doesn’t feel comfortable bringing her to the school, a breeding ground for stuffy noses, coughs and sneezes.

Her siblings have accepted and adjusted to Marcella’s condition. But the older kids who knew her before the virus have had a tougher time.

Despite the frustrations, Marcella remains in good spirits. During an interview, Marcella scoots around the house.

“She’s very feisty,” Amy said with a smile. “That’s always been her personality.”

“She’s just accepted it and rolled with it,” Amy added.

Talking through her mom, Marcella said she misses being at school with her friends. She initially wanted nothing to do with the robot. Even now, she calls it boring. But she doesn’t want to let it go and treasures the interactions with her peers.

While there’s still a chance her condition may improve, Marcella’s future is unclear.

“We don’t know because they’re still learning about the disease,” Amy said.

The goal is to eventually get Marcella physically back into school, even for part of the day.

“We’re not giving up hope,” Amy said. “Our faith is strong.”

Assistant Special Education Curriculum Manager Debra Washington had never met Marcella Pierce, but heard of the little girl down the bayou robbed of a normal life.

Marcella was the first person Washington thought about upon seeing a white robot during the Council for Exceptional Children’s annual convention in San Diego.

“And when I got back I reached out to the family and then the school. Then we consulted with VGo and got to work,” Washington said.

VGo offers robots that essentially gives people the ability to be in two places at once _ and move around as if they were in a second location.

The school district paid for the program and quickly designed a system to a include Marcella in the classroom.

“Even though she’s not physically there, she’s there,” Amy added.

Through Mar-2, Marcella interacts with her classmates and Bossier from home. She attends English and math lessons, about three hours each day. Her mom teaches her science and social studies.

Other students and Bossier will read to her and work with her on English assignments. She’s an active member in a math group each day.

Sometimes Marcella can stay for an extra lesson, but only as long as she can physically handle it.

“There’s about an hour and half break between English and math so that’s good because it gives her some time to rest,” Amy said.

Marcella sees everything on an iPad. She connects to VGo through an app and controls where it moves and can even “raise her hand” – an option that turns on a small flashing light to notify the teacher when she has something to say.

Marcella and Amy can move Mar2 and the camera serving as Marcella’s eyes. If she needs to go to another table to work with a group on a math problem, she can. If the teacher calls the class’s attention to the whiteboard at the front of the room, she can turn the camera to see what’s going on.

All Marcella needs is a reliable internet connection to become Mar2, short for Marcella 2. When it came time for the class picture, Bossier rolled the robot to the library and Mar2, with Marcella on the screen, is included in the picture.

“I always tell people, I don’t have 15 students, I have 16,” Bossier said.

Amy could homeschool her daughter. But the robot allows her Marcella to maintain connections with teachers and make friends in class.

“This is good not only for her academics, but also for her social skills,” Amy said.

“The students love it when it’s their turn to work with the Mar2,” Bossier added.

Grabbing a first grader’s attention is already difficult. Bossier was initially worried how much harder a robot in the room would make it.

“About a month or so in she just became a part of the class,” she said. “Every so often one of them will yell out, ‘Marcella’s here,’ but Mar2 has just become part of the group.”

Bossier and Amy text to stay in touch. Bossier lets her know when they’re about to start English and math. Amy lets her know when they’re connecting.

“I guess one of my lessons was pretty boring, because one day I caught her sleeping,” Bossier said, laughing. “I took a picture of her and sent it to Amy.”

South Larose Principal Terri Chiasson said the disease took away a good student.

“We love our Marcella,” Chiasson said.

Two of her classmates, Alexa Roberts and Caroline Hymel, became friends with Marcella through the robot.

“She talks to us when we need her to,” Hymel said. “Plus we have a robot in the class.”

“It’s like she’s a part of us,” Bossier added.