BRUNSWICK — The Make-A-Wish Foundation was able to give a 10-year-old Brunswick girl, LeAnna Moore, who is nonverbal due to a life-altering condition, her voice on Tuesday.
LeAnna suffers from spinal muscular atrophy-type 1, which is a genetic disease that affects the part of the nervous system that controls voluntary muscle movement.
“She developed normally up until she was about 4 month old,” said Michelle Armelli, LeAnna’s grandmother. “She just started slowing down and stopped moving.”
At 6 months, LeAnna was taken to the emergency room with a case of pneumonia. This was just before an appointment with a neurologist to determine what was causing her movement problems. LeAnna’s family was given an answer months later.
“She spent the first year of her life in the hospital,” said Brandi Moore, her mother.
Doctors diagnosed LeAnna shortly after her first birthday.
“She’s been home ever since,” Brandi said.
But it hasn’t been easy, especially as LeAnna’s condition left her unable to speak.
The wish that LeAnna and her family hoped for was a way for her to communicate. Make-A-Wish, along with Tobii Dynavox, the manufacturers of an eye gaze communication device, stepped in to make that happen.
LeAnna had tried a similar device before with the help of her teachers, but they soon stopped using it and tried to find cheaper options.
But now LeAnna has a device of her own.
She received a communication device called the I-12+ on Tuesday, which is created by Tobii Dynavox.
“It’s basically a speech generating device,” said David Dugan, a technician for Tobii Dynavox. “She can use her eyes to communicate anything she wants. We just use the distance between your pupil and the little white part of your eye. Wherever she looks after she calibrates, she just holds on a button for a certain number of times and it makes that selection.”
After Dugan set up the device, Brandi and Armelli, along with Make-A-Wish volunteers crowded into LeAnne’s room, which is decked out in bright pink blankets and stuffed animals, in order to hear her begin to speak.
Dugan asked LeAnna if she was ready to try it out and she responded by wiggling her eyebrows. This is just one way she learned to communicate before the device.
Dugan showed her a few features and told her she could begin speaking. She began by saying “hello,” “I am LeAnna” and “I feel good.”
Her favorite part of the machine was an icon that was programmed in for her of the famous purple dinosaur, Barney, which is her favorite show.
“Barney … Barney, Barney,” kept emitting from the machine as she smiled and the volunteers and family members chuckled.
“Do you want me to play Barney on there for you?” Dugan asked her after a few minutes. She wiggled her eyebrows in response.
“Pretend I don’t know what that means,” Dugan told her. “Can you say yes?”
LeAnna just wiggled her eyebrows in response. Dugan chuckled and asked her what she wanted to say to the members of Make-A-Wish.
“Thank you,” was what LeAnna was able to say with the help of her new device before Dugan put on the show for her.
The cost of the machine for a family who was to pay out-of-pocket is roughly $15,000, according to Dugan.
He did an initial set-up and training session with the family before the Make-A-Wish Foundation was brought out to see how the machine works.
“Amazing, truly amazing,” said Armelli in response to receiving the device and getting to see her granddaughter speak.