By Sean Barron
Even though 5-year-old Isabella DeSantis of Canfield is a bit too young to drive, she was still able to get her own set of wheels – and her mother couldn’t have been prouder.
“She loves it when kids and adults talk to her and interact with her,” said Kristen DeSantis, who explained that her daughter was diagnosed with Pallister-Killian syndrome.
PKS is a very rare chromosome abnormality that occurs randomly and for no known reason. Characteristics include low muscle tone, a high and arched palate, unusual spacing between the eyes and cognitive and developmental delays, according to the National Organization for Rare Disorders website.
Because of PKS, Isabella, who is nonverbal, had to endure spinal, kidney and abdominal surgeries, though she has been doing well of late, Kristen said.
No matter what effects the condition may have on Isabella, she will find it easier to get around. That’s because she was one of seven children with physical challenges who came to Saturday morning’s second annual Go Baby Go workshop at the Mahoning County Career & Technical Center, 7300 N. Palmyra Road, to receive a motorized power-wheel toy car.
Go Baby Go is a national effort to improve the mobility of children age 5 and under who have spina bifida, Down syndrome, PKS, cerebral palsy and other physical challenges.
Volunteering to assemble the vehicles were MCCTC and Youngstown State University students, along with local electricians, instructors, interns and others.
“We feel so blessed. It’s unbelievable that they’re doing this for her; this is huge,” said Isabella’s mother, who came with her husband, David, and sons Brady, 6, and Trey, 14.
The cars were modified and adapted to fit the children’s specific needs and took into account the youngsters’ physical limitations, noted Bev Lankitus, a physical therapist with the Mahoning County Educational Service Center.
The vehicles also give recipients “a typical way to play” with their siblings and others largely by helping them improve their cognitive development, enhance their natural sense of exploration and better their ability to grasp cause and effect, she noted. In addition, the motorized toys are beneficial because children that age often are too young to qualify for insurance to cover the cost of a power wheelchair, Lankitus explained.
“The kids just light up,” she continued. “Parents say, ‘I never thought my kids could do anything like this.’”
Helping with the cars’ body work and wiring were nine of Walter Baber’s students, who likely will also benefit in their own ways.
“I push critical thinking and problem-solving,” said Baber, an MCCTC engineering teacher for 11th- and 12th-graders who praised his students’ voluntary efforts. “They have to think outside the box and come up with solutions that have not been done before.”
Also happy to do a little body work on a 12-volt Jeep model was Nick Walker, one of five members of YSU’s Sigma Alpha Epsilon fraternity who came to Saturday’s workshop.
“It feels good to see them have fun with something you did yourself,” Walker said, adding that his fraternity is dedicated to taking part in projects that help children. “At the end, it’s all about seeing the smile on their face. You may not have done something huge, but you did something to change a life.”
Giving his time to the program for similar reasons was Mark Guerino, who has an extensive background in electronics and engineering. His mission entailed providing the youngsters with multiple ways to use their cars, including making it easier for their siblings to help, he said.
Working to place the finishing touches on a Disney-themed 6-volt coupe model were Mary Ann Whitcher and Beth Smith, both of whom are in an occupational-therapy program at Brown Mackie College in Akron and are serving as interns with OH WOW! The Roger & Gloria Jones Children’s Center for Science & Technology in downtown Youngstown.
Whitcher and Smith installed pieces of plastic pipe in the car, which also had an on-and-off button and certain modifications to the steering wheel for a child who has low muscle tone.
Suzanne Barbati, OH WOW!’s executive director, explained that the Go Baby Go project also parallels core principles that the children’s center embraces, such as giving youngsters increased ways to explore their environment and improve their movement abilities while allowing them to further appreciate certain aspects of science.
She also thanked the Rev. Lewis W. Macklin II, pastor of Holy Trinity Missionary Baptist Church in Youngstown, for providing funding for the workshop.
Providing many of the tools, parts and supplies was Natalie Wardega, operations director for Medina-based RePlay for Kids, a business dedicated to increasing the availability of toys and adaptive devices for children with disabilities.
Also, a makeshift obstacle course was set up to let the children experience driving their new cars.