Harrison Sindowski is a handsome 4-year-old boy, who has curly red hair and beautiful green eyes framed by long eyelashes. He lives with his parents, Kelly and Tom Sindowski, on a quiet street in a pleasant subdivision in Hickory Hills.
But this picture has a heartbreaking flaw. Harrison has severe epilepsy, diagnosed at 3 months and complicated later by an additional diagnosis of Lennox-Gastaut Syndrome (LGS), which includes multiple different types of seizures that are hard to control and resistant to medication.
“Only one in 100,000 kids is diagnosed with what Harrison has,” said Kelly. “We had never heard of it. With his diagnosis, the doctors told us that he likely will never walk, or talk, and he will need intensive care all of his life.”
He is also at a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP), which is responsible for about 10 percent of seizure-related deaths.
“This means that we don’t sleep soundly through the night. We have a night-vision view monitor on his bed, which sounds an alarm in our room if he is moving around. We take turns checking on him,” said Kelly.
“But Harrison is a little fighter and has proved them somewhat wrong. That’s why we call him Superman. At the age of 2 ½, he took his first step and we continue to work on his speech. He may never talk, but we are working on it,” she said. She added that presently he functions at the level of 18 months to 2 years.
Kelly said Harrison goes to Dorn Elementary School for its early childhood and pre-K program, where he receives occupational therapy. He also has speech and occupational therapy at Advocate Christ Medical Center in Oak Lawn.
The Sindowskis work together as they minister to Harrison, whom they call their “special angel.” Stepping into their bright, decorated home, a visitor is greeted with smiles and a warm welcome. It is a home filled with an atmosphere of love.
While they adore each other, their sole focus is Harrison, their only child. They lavish an abundance of physical affection on Harrison, as well as the necessary 24-hour, life-sustaining attention he needs.
Harrison was born in April, 2012 and there was no hint of any problems.
“For three months, we had a normal life with him,” said Kelly. “But then we noticed he was making strange jerky movements with his arms. We took him to the doctor and after many tests, he was diagnosed with the epilepsy and our terrible journey began.”
Kelly said people just do not realize what all the ramifications of the condition involve.
“We certainly didn’t and learned by trial and error,” said Kelly. “He can never go outside without a helmet because of the danger of his falling when he has a seizure. Outside he is always in a wheelchair. He has no sense of boundaries, so even in the house, we have to watch that he doesn’t fall into a table or counter. If he were on a bed, he would just walk or roll off the edge. He can’t discern danger.”
When he was first diagnosed, Kelly said he would have as many as 40 seizures a day.
“He has been through at least 14 medications and nothing really helps, although the seizures have slowed to maybe as many as 15 per day.
Asked if they ever are able to take a break or get away, they replied that it is very difficult as Harrison cannot be left with anyone, although Kelly’s mom comes three days a week so she can go to her part-time job.
“My mom has built a bed for Harrison at her house and adapted her other rooms so he can be there. But it can’t be for very long, as he needs all his medications and he is not very mobile,” said Kelly.
Her husband added that it is difficult emotionally for them to be away from Harrison. “So we invent our own special times here at home,” said Tom. “We celebrate everything and make a big deal of all the small things.”
“We also take him to the city’s Halloween parties for kids and the Christmas parties. I make a big deal of Halloween and create costumes around his wheelchair,” said Kelly. “He seems to love it. Last year he was Superman in a little plane built around the chair and the year before he was a little leprechaun, sitting in a pot of gold.”
A recent bright moment for the family was the Epilepsy Foundation 5K Marathon at Montrose Harbor in Chicago. Five thousand people attended the event, but it was a very special visitor who thrilled the Sindowski family. They had the pleasure of meeting for the first time a young man from North Carolina named Michael Newsom, who has been running for Harrison in races across the nation for the past two years.
Newsom volunteers for an organization named Who I Run 4, which raises funds for the Epilepsy Foundation. Parents of children with epilepsy can sign up with the organization and are then matched up with a runner.
“We were matched with Michael in September 2014, but we had never met him in person. We got acquainted through Facebook and he stayed in touch with us, sending medals and ribbons he won as he ran for Harrison in various marathons. Harrison’s room is filled with all the awards,” said Kelly.
“This was his first trip to Chicago and we were thrilled to meet him. He stayed with us for five days and we just fell in love with him,” said Kelly. “He also fell in love with Harrison and actually ran in the race with him, pushing him in a jogger-stroller. He carried Harrison over the finish line at the end of the race. Michael now has a large extended family of aunts, cousins, brothers and sisters in this area and we invited him to come back soon.”
Kelly praised the city of Hickory Hills for their donation and support of the marathon.
“When I contacted them a few weeks ago. I was only asking if they could place a welcome sign to Michael on the city’s billboard in front of the City Hall, to draw attention to the marathon. I thought it would be cool for Michael to see. I wasn’t expecting their generous donation, but we are very grateful.”
For further information on Who I Run 4, contact www.whoirun4.com.