Louisa four-year-old ready to start school
By Brian Cain
Jayden Schoening, who was born without fingers due to a rare disorder, practices writing his name.
Jayden Schoening is a typical four-year-old boy.
The energetic and inquisitive child enjoys running and playing with his siblings and his family’s newborn puppies, and he loves doing things with his hands.
He paints, draws, plays with building blocks and showcases his dexterity.
For instance, using only one hand, Schoening can pick up a penny off of any flat surface, which is no small feat for a four-year-old who is all thumbs–literally.
Schoening has Moebius Syndrome—a rare neurological birth defect—which resulted in him being born without half of his hands.
“See,” the boy said, after pressing the flat part of his hand—where his fingers would have been—onto the penny and then lifting it high above his head. “It sticking with my hand.”
And like any other four-year-old, Schoening is excited about attending school for the first time this fall.
The outgoing child said he wants to build towers, draw pictures of flowers, learn to write his name and ride the school bus.
“I think mommy’s more scared about him going to school than he is,” said his mother Melissa Zummo.
“Why you going to be scared?” Schoening asked his mother.
Zummo told her son that she had never been away from him before, which drew another “why?” from the young boy.
“Because you’re my baby,” Zummo said.
There was no change in the outward expression on the boy’s face, but there was no mistaking his feelings as he erupted into laughter.
“I’m not a baby,” Schoening retorted. “I’m a big boy.”
The inability to smile, blink, and move his eyes laterally are some of the dominant characteristics of Moebius Syndrome.
According to the National Insistute of Neurological Disorders and Stroke, part of the National Institutes of Health, Moebius is caused by the absence or underdevelopment of the sixth and seventh cranial nerves—which control lateral eye movement and facial expression—and those born with the disorder often experience physical deformities caused by problems with other cranial nerves.
Schoening also has a clubbed left foot and crossed eyes—he has had several surgeries on each to help correct the problem—and he is missing half of his right foot, which is developed to the ankle and heel.
It’s clear—while watching Schoening run around in the family’s back yard or picking up a penny off the table—that the boy has adapted to his physical condition.
But what is also clear is that Zummo’s biggest concern about her son entering kindergarten at Thomas Jefferson Elementary School this fall is his emotional well-being.
“I know how mean kids can be,” Zummo said. “I’m worried he will start to feel ashamed of himself.”
The 34-year-old mother of seven said that she already witnessed first-hand what could be in store for her son.
Zummo said she recently heard a child call Shoening a name.
“I don’t think he heard it, but it upsets me,” Zummo said. “That makes me not want to send him to school.”
But Zummo is hoping that a friendship she developed with Timothy Smith, founder of Many Faces of Moebius Syndrome, will help her son build up his confidence and raise public awareness about his condition.
The 47-year-old Smith started a Web site and Facebook page to connect the Moebius community seven years ago…
To read the entire story, see this week’s The Central Virginian now available on newsstands.