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Parents caring for ill son find some super supporters

  • Written by Sharon L. Filkins

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.

Oak Lawn eyes space for senior center

  • Written by Joe Boyle

Oak Lawn Mayor Sandra Bury said that preliminary plans are moving forward to lease space for a new senior center in underutilized space at Park Lawn.

“They have additional space that they no longer need,” said Bury. “Everyone is pretty excited about this.”

The mayor said the idea of signing a long term lease with Park Lawn, 10833 S. Laporte, Oak Lawn, has been talked about for over two years. Park Lawn provides instruction and opportunities to promote independence, choice and access to community living for people with developmental and physical disabilities.

But it was not until recently that plans to renovate sections of the Park Lawn facility for seniors began to take shape. Less classroom space is being utilized for participants, many of whom are receiving vocational training and other locations and at businesses.

The Reporter went on a brief tour Friday of the presently underutilized section of the building, which is at the north end. A large room near a parking lot is available for senior programs such as crafts. A kitchen would be available on certain days for the proposed senior center. An activity room can be made available for exercise programs for seniors, according to Jon Perry, vice president of the Park Lawn Board of Directors.

While Bury cautions this is the preliminary stage of discussion, she pointed to Oak Lawn’s association with Park Lawn. With kitchen space, meals can be provided once a month. Work needs to be done on the structure, but Bury sees the potential.

“I know a lot of people have brought up they want a new senior center built,” said Bury. “But that can be quite expensive. But why do that when you already have this structure here. I think the seniors understand that. We want to do what’s right for them and the taxpayers.”

Bury sees the advantages of having the senior center at Park Lawn. The needs of Park Lawn participants and some seniors are similar. Those needs can be taken care of in a facility like this, according to Bury.

The proposed move to the Park Lawn location is being done to respond to many seniors who had grievances about the current site at 5220 W. 105th St., the old McGugan Junior High School location. Seniors complained about not having enough rooms for some of their programs. Aerobics instructors were concerned about a lack of space as well.

The move to the old McGugan site was necessitated because the old Oak Lawn Senior Center building at 5330 W. 95th St. was sold to Beverly Bank and Trust and was renovated into the Oak Lawn Trust and Savings Bank. The senior center at the old McGugan location opened in June, 2013.

“The seniors want to have a safe place,” said Bury. “Four years ago we looked into (Park Lawn). “

Bury said it was through the efforts of Trustee William “Bud” Stalker that discussions with Park Lawn “reenergized.”

While sufficient room appeared to be available in the parking lot, Stalker pointed out that the most mornings the lot is filled with buses for Park Lawn participants.

“This is definitely an issue,” said Stalker. “But it’s not insurmountable.”

Perry said other arrangements could probably be made for the buses on specific days.

Bury said more discussions will take place to make this a facility that seniors will want to come to and take part in various programs.

Sabre Roon closes after 67 years in Hickory Hills

  • Written by Dermot Connolly

 

The 67-year-old Sabre Room banquet hall, a landmark building located at 8900 W. 95th St. in Hickory Hills, held its last events on Saturday and Sunday, before shutting its doors for the last time.

The family-owned business was founded by Arnold and Marie Muzzarelli in 1949, on the 30-acre site of the luxury Dynell Spring Spa dating back to the 1920s. In recent years, it was known for holding wedding receptions, New Year’s Eve parties, quinceaneras and other social events in its various rooms.

But in its heyday, with space for up to 2,500 people, it was a popular concert venue for top stars such as Frank Sinatra in 1976, and Dean Martin in 1977. Liberace, Bob Hope, Dorothy Lamour and Rudy Vallee all appeared there over the years as well.

The Muzzarellis, who lived upstairs, had made the connections necessary to draw the top acts through their previous training at the Ambassadors East Hotel and Pump Room in downtown Chicago. It helped that the Sabre Room encompassed 100,000 square feet of space, and acres of parking.

“I’m sorry to see it go. But I suppose it had to happen eventually. I have a lot of great memories there,” said Ald. Tom McAvoy (3rd Ward), whose ward includes the property.

He said he didn’t see Sinatra and the other big names, but he was there for plenty of weddings and other occasions.

“I never got a chance to meet Arnold Muzzarelli (who died in 1992), but I had the pleasure of meeting his wife, Marie. She was there, working the phone until she was 90,” said McAvoy. When Marie Muzzarelli died in 2010, at 90, the business was passed on to their children, Arnold Jr., and daughters, Janice and Yvonne.

The general manager, Art Golden, the current treasurer of the Hills Chamber of Commerce, had started working there when he was 15, in the 1970s.

“I wish Art the best of luck. He was there so much, he was all the time,” said McAvoy of Golden, who could not be reached for comment this week.

Worth residents Ed and Maggie Palenik are also sad to see the Sabre Room close, having worked there themselves as bartenders and waitstaff over the years, and just helping out where they could. Their daughters worked there also in recent years.

“We knew the Muzzarellis well. They lived upstairs. It was always a very well-run business. A lot of history went on there, and a lot of events were still held there, but just on a smaller scale. Just like the Martinique and other places like it that also closed, everything from the taxes, and gas bills and electric bills just got to be too much. And there were illnesses in the family too.”

McAvoy said that a developer is interested in the property, but he could not go into any details because everything is still in the preliminary stages.

“What happens there is very important to me and my co-alderman, Brian Fonte,” said McAvoy, who also represents the 3rd Ward.

“With 30 acres, it might be one of the biggest developments in Hickory Hills since the 1960s,” he said.

“It is going to be a planned-use development, so it won’t be broken up into different parcels,” said McAvoy.

“But it is going to be a long process. The developer still has to get planning permission, of course, and present plans before the full City Council. It is going to take months. No meetings are scheduled yet, but we’ll expect big crowds when they are held,” he said.

 

District 218 freshmen will get iPads to start the high school year

  • Written by Dermot Connolly

The summer break has just begun, but incoming District 218 freshmen can at least look forward to receiving iPad tablets when they start high school in the fall.

The rollout of the 1:1 computer program will be complete in the fall of 2017, when students in the other grades will also receive iPads.

School board members gave their final approval to the program with a 6-0 vote at the May 16 meeting. School board member Robert Stokas was absent.

“We’ve already tentatively agreed to this, but this vote makes it official,” said Ty Harting, District 218 superintendent. All the teachers in 218, which includes Richards High School in Oak Lawn, Shepard in Palos Heights and Eisenhower in Blue Island, have already received iPads and professional development during the spring semester this year.

Neighboring School District 230 also embarked on a similar 1:1 technology program this year, but the students in those schools -- Sandburg, Stagg and Andrew high schools -- will be receiving Chromebooks.

According to a statement on the District 218 website, “The iPad has a strong connection to education with access to a large variety of quality apps and resources. Teacher feedback highlighted the importance of the productivity apps and creativity apps that are often exclusive to the iPad. The iPad includes powerful classroom management apps and access to interactive digital textbooks and course materials.”

It concludes, “We believe that the iPad provides rich opportunities for student engagement and instructional innovation that will meet the needs of diverse learners in our district.”

Through the three-year leasing program, the district will lease 2,600 iPad Air 2 Wi-Fi 64 GB tablets and protective cases from Apple Inc., according to information on the district website. The devices will cost the district $424 to lease, but it was pointed out at the meeting that that price represents a $130 decrease from the price originally considered.

According to district officials, leasing the computers for a three-year period will cost the district about $1 million, saving $160,000 from the cost of buying them.

Students will be asked to pay a $25 fee per school year to insure the tablets against theft or damage.

Harting said the board was advised to institute the $25 fee rather than getting the full-protection insurance offered by Apple Inc., because it would be too costly and not worth it for how often it would be used.

However, President Thomas Kosowski noted that students cannot be required to pay the fee to get the iPads.

“I would strongly encourage students to pay the $25,” said Harting, because he said it would be much more expensive to have to replace a lost or damaged computer.

Students who do not pay the $25 fee, and something happens to their device, they would be required to pay the entire cost of replacing it.

But the board members agreed that students could not technically be forced to pay the entire cost.

“What if a student gets bullied and their iPad is stolen or broken, and they just can’t afford to replace it? We want all our students to be able to participate and learn using these devices,” said Harting.

Harting said the matter would be treated like a lost textbook or any damage caused by a student, in which the board does as much as possible to get the money back,

Board member Johnny Holmes pointed out that any fees owed typically follow the student through their time in school. This could prevent a student from participating in graduation and diplomas can be withheld.

“But we can’t withhold diplomas indefinitely,” said Harting.

Hickory Hills alderman opposes limits on Committee of Whole meetings

  • Written by Sharon L. Filkins


Two seemingly routine agenda items at the May 26 meeting of the Hickory Hills Council erupted into a lively response from council members resulting in a non-unanimous vote to approve a summer meeting schedule and the tabling of a request to prohibit the placement of fences in front yards.

When Mayor Mike Howley introduced a recommendation to cancel Committee of the Whole meetings for the months of June, July, August and September, Ald. John Szeszycki (2nd Ward) protested.

“I have said this before, and I will say it again,” he said. “I am opposed to canceling these meetings for four months. I think we should meet every month, even if it is just for 10 minutes, to review everything going on so we are all informed. And what if something important or urgent comes up? We can’t wait four months to discuss it.”

The Committee of the Whole meets prior to the regular council meeting on the fourth Thursday of the month.

Ald. Debbie Ferrero (2nd Ward) replied that if an urgent matter came up, the council would be notified and a special meeting would be called.

“Why should we have to go through all that? Just keep the meeting schedule and be here prior to our regular council meeting, as we do now,” responded Szeszycki.

However, the recommendation was approved, with seven “yes” votes and Szeszycki voting “present.”

In the Committee of the Whole meeting prior to the council meeting, Szeszycki had also protested a suggestion from City Clerk Dee Catizone to change the hours of operation for the City Hall, from 9 a.m. to 5 p.m. Monday through Friday to 8:30 a.m. to 4:30 p.m.

Szeszycki said he thought the City Hall should remain open until 5 p.m., in case people needed to stop by on the way home from work, to pay bills or had questions. Catizone replied that the most activity from residents occurs in the earlier part of the day and that there is a drop box available for the payment of bills.

Ald. Tom McAvoy (3rd Ward) suggested that the new hours be tried for a period of three months to see if it worked. “If it is not working, we can always change the hours back to the original time.”

Howley supported Catizone’s suggestion. “I trust her observation on this, as she is here every day and sees what the traffic flow is like.” No date was given for the start of the change in hours.

On the matter of fences, City Attorney Vince Cainkar requested approval of an ordinance amending the city building code to prevent the placement of fences in front yards in the city, sparking an instant reaction and flurry of questions from the council.

Ald. Scott Zimmerman (4th Ward), spoke up immediately. “What about corner properties where the front of the house does not necessarily face the street? I live on a corner and I have a fence on the side of my house near my driveway. Is that considered a front yard fence as it faces the other street?

“Basically, you have two front yards. Anyone living on a corner has that situation,” said Building Commissioner Joe Moirano. “I have this discussion all the time with residents. It is a problem.”

Ferrero asked about front fences she has observed on properties around the city, such as elaborately designed brick fences and statuary work serving as fences. “Will this ordinance apply to those?”

Cainkar finally suggested tabling the motion until the next meeting. “I will rework the ordinance and provide drawings to answer some of these questions,” he said.

In other business, the council approved an updated Employee Benefit Handbook and approved revisions to the Police Supervisor’s Policy, effective July 1.

The meeting was adjourned to executive session to discuss police chief merit pay.