Every time Janet Leshko takes her son to a doctor’s appointment, to visit family or out to a restaurant, she has to ask one of his caregivers or his father to lift him out of his wheelchair and secure him into the front seat of her SUV. Then she puts the wheelchair in a trailer hitched to the back.
The process takes about 10 minutes. Leshko, 56, is slight, and she can no longer lift 25-year-old Kyle, who weighs 160 pounds and has spastic cerebral palsy.
Janet, who lives in Raleigh, knows a wheelchair-accessible van would make their lives easier, so she started an online GoFundMe page in an effort to raise $40,000 to buy one.
“A van would make it possible for me to take him to his grandma’s or the doctor or really anywhere,” she said.
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Janet’s experience with cerebral palsy began long before Kyle was born. Her aunt had the disorder, which left her bedridden most of her life.
To honor her aunt, Janet began going door-to-door when she was 11 years old to collect money for the United Cerebral Palsy Telethon.
“People would just give us a dollar or 5 bucks at the door or we’d go stand in front of Walmart and collect money,” she said.
As she got older, Janet became more involved with the organization, working the phone lines for telethons and eventually joining its board.
When she got pregnant, she had no idea that cerebral palsy would continue to be such a big part of her life.
Cerebral palsy refers to a group of neurological disorders that affect body movement. It is caused by abnormal brain development during pregnancy or early childhood as a result of infection, premature birth or other medical complications. One in 323 children born in the United States is diagnosed with some form of cerebral palsy, according to the Centers for Disease Control and Prevention.
Kyle was born five weeks early and contracted group B strep meningitis. The infection destroyed 50 percent of his brain and led to spastic cerebral palsy, the most common form of the disease, which causes excessive muscle stiffness.
Doctors told Janet her son would never roll over.
“They showed us the brain damage on the X-rays and just said, ‘It doesn’t look good,’ ” she said.
But one doctor reassured her there was hope. He showed her pictures of children and adults with cerebral palsy leading active lives.
Twenty-five years later, Kyle is lively. He attends Lindley College in Cary, a day program for high school graduates who suffer from developmental and intellectual disabilities. He and his classmates discuss current events, take classes, go on field trips and learn skills to become more independent.
At home, Kyle works with caretakers to learn skills such as addressing mail and completing chores.
Kyle has undergone five surgeries, most recently a corrective procedure for scoliosis at the Hey Clinic for Scoliosis and Spine Surgery in Raleigh. He can immediately recall the date of his operation: “Oct. 12, 2015, with Dr. Hey.”
Janet said that while her son struggles with many cognitive abilities, he has an impeccable memory and can recall dates especially well.
In his free time, Kyle likes to go to the beach and watch sports, especially N.C. State. His bedroom is adorned with Wolfpack memorabilia, from a poster of Super Bowl-winning quarterback Russell Wilson to a football on the shelf and blankets on his bed.
The Leshkos even have a patio table made from the N.C. State logo on the old Reynolds Coliseum floor.
Cerebral palsy is not a hereditary condition, so Janet was surprised when she learned her son had the same disorder she had been raising awareness of for nearly two decades.
She knew better than most people what to expect from the disorder, but it didn’t make the shock of Kyle’s diagnosis any easier.
“The good thing was that I was already doing fundraising,” Janet said, adding that she had made connections through United Cerebral Palsy.
Children’s Flight of Hope, now based in Morrisville, flew Kyle for free to St. Louis for one of his first surgeries in 1994.
Janet attended the groundbreaking of the Charlie Gaddy Children’s Center in Raleigh, which Kyle attended for a short time. The center helps young children with disabilities.
Janet said she has seen drastic improvements in treatment for cerebral palsy over the years. Decades ago, her aunt was pushed around in a wooden wheelchair. Kyle now uses a motorized chair that gives him more independence.
She hopes a wheelchair-accessible van will help Kyle stay active and enjoy life.
Want to help?
To donate, go to www.gofundme.com/7yzytp5g.