BIDDEFORD — Thursday was a typical afternoon for Joey Shortsleeves, 10, of Biddeford. His mother, Erica Herring, met him when he got off the bus from school. He spent sometime inside watching a video and later went out to play with some of the kids around the neighborhood, his sister Nicole Shortsleeves, 12, and the two children his mother watches during the day.
Some of the adults in the neighborhood, who are friends with Joey and his family, helped his mother watch the children who were running, biking and scootering up and down the street and in the back lot.
In many ways, Joey is like any typical 10-year-old. He is in the Boy Scouts and will be on a Little League team this year.
He can also be a little bit mischievous.
“I’m starting to see him open draws and cabinets,” said Herring. “He likes to open ones he’s not supposed to.”
But the young boy has some significant differences.
He was diagnosed with lissencephaly, a rare brain disorder, when he was 1 1/2-years-old. According to Herring, her son is one of only two children in the state diagnosed with this disorder and he is one of 2.5 percent of the population who has been diagnosed with microcephaly.
Microcephaly, which means “small head,” is a neurological disorder where the circumference of the head is less than it should be in an infant or child, according to the Foundation for Children with Microcephaly Web site.
Despite these disorders, Joey understands when people talk to him.
“He understands everything and he remembers things,” said Herring. “He knows who everybody is in baseball, who’s in Boy Scouts.”
But he speaks very little. To communicate, said Herring, he looks at things he wants, smiles when he’s happy and at school he has a switch he can press to answer yes or no questions.
Joey also has difficulty moving.
On Thursday, he sat in a wheelchair while watching a video of himself and others at a swim meet. On the video, Joey has a big smile on his face while lying on his back in the water.
The process of getting him out of his wheelchair and into his new walker takes his mother about 10 to 15 minutes. She must lift him out of the chair and place him on his body brace, which is laid out on the floor. After strapping Joey in, she lifts him again and places him into a special walker that allows Joey to move his feet and walk himself.
Herring purchased the TAOS walker in November, with financial assistance from the City of Biddeford, and it has made a huge difference for her son, she said.
“Today he brought home a note saying he walked all around the school,” said Herring.
He even plays kickball with the other children in the neighborhood, she said.
But Joey’s condition presents a challenge to himself and his family.
In June, the family is hoping to attend the three-day conference in Scottsdale, Ariz., for children with Joey’s disorder and their families. The conference is offered by the Foundation for Children with Microcephaly.
At the convention, Herring said, she hopes to learn about new therapies that can help Joey, meet with a specialist about her son’s condition and connect with other families that have children like her son.
The convention will be helpful not only for her and Joey, said Herring, but also for Joey’s sister Nicole.
“Nicole is great with Joey,” said Herring, but it’s not an easy situation.
At the convention, Nicole will meet others who have siblings with the same disorder and have a chance to speak with children who can relate to her life.
To make the trip, the family needs to raise at least $10,000 to pay for airfare, lodging, and registration for the conference and meals.
To raise funds, a bottle drive is being started at the Biddeford Bottle & Can Redemption Center at 310 Alfred St. Beverage containers can be donated in Joey’s name.
Also, checks or money orders can be mailed directly to the Foundation for Children with Microcephaly, Attn: Donations, P.O. Box 12134, Glendale, AZ, 85318. There should be a notation on the check or money order that it go for Joseph Shortsleeves. Donations are tax deductible.
For more information, call the Foundation for Children with Microcephaly at (623) 476-7494.
— Staff Writer Dina Mendros can be contacted at 282-1535, Ext. 324 or dmendros@journaltribune.com.
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