Monday, September 1, 2014 - Loading…

Published: Thursday, 4/24/2014 - Updated: 4 months ago

Sylvania boy, 9, and his family cope with muscular dystrophy

BY NATALIE TRUSSO CAFARELLO
BLADE STAFF WRITER
Jimmy Kolopajlo, 9,  in his fourth-grade classroom at Highland Elementary School in Sylvania, was diagnosed with Duchenne muscular dystrophy at age 3. The genetic disorder primarily affects boys and is characterized by progressive muscle degeneration and weakness because of a protein absence. Jimmy Kolopajlo, 9, in his fourth-grade classroom at Highland Elementary School in Sylvania, was diagnosed with Duchenne muscular dystrophy at age 3. The genetic disorder primarily affects boys and is characterized by progressive muscle degeneration and weakness because of a protein absence.
THE BLADE/DAVE ZAPOTOSKY Enlarge | Buy This Photo

In retrospect, Sylvania resident Linda Kolopajlo said her son Jimmy early on presented classic symptoms of Duchenne muscular dystrophy.

However, Jimmy’s health condition was not obvious to her and her husband Larry at first.

“It wasn’t one thing that happened. He fell a lot, and then would ask ‘carry me up the stairs,’ and we thought he was being lazy.

But looking back now … ,” she said as she recalled how Jimmy was diagnosed with the degenerative genetic disorder at age 3.

It weakens muscle tissue, and those with the disorder have a life expectancy of 20 to 30 years.

Jimmy, a fourth grader at Sylvania’s Highland Elementary School, could walk and play until recent months when his condition rapidly declined, she said.

He fell and broke his leg April 1, the day he transitioned into a power wheelchair.

Before that, if he fell, with some help, he could get up.

But this time it was more difficult and Linda’s longtime friend, Sylvania resident Amy Hurley, was called to assist with Jimmy that April day.

“It was probably three months since I had seen him. I just could not believe how much he changed. I always knew at some point I needed to do something, but it smacked me in the face that day,” Ms. Hurley said, adding that the last time she saw Jimmy he was running.

For Ms. Hurley that “some point” had arrived.

She initiated a benefit event for the JimmyKare Fund to assist the family with expenses.

The event at 6:30 p.m. May 3 at Gary’s Barn, 12290 Sylvania-Metamora Rd. near Berkey, is to raise funds primarily for a wheelchair-accessible van to transport Jimmy to school. Tickets are $20.

Jimmy sports a neon-green cast on his right leg but said he is excited for May 13 when doctors will assess if it is time to remove the cast that he said is signed by “a million people,” some of whom are supporting the fund-raising event.

Several relatives are leading the effort and 20 people have donated items to be auctioned, said Sylvania resident Renee Carstensen, one of the organizers.

She said the goal is to raise $40,000.

The Sylvania Community Arts Commission is in charge of entertainment, with local bands set to play.

Jimmy Kolopajlo, 9, heads down a hallway  at Highland Elementary School in Sylvania with his mother, Linda, and brother, Joey, 11. Joey, also a Highland student, is one of Jimmy’s biggest helpers. Jimmy Kolopajlo, 9, heads down a hallway at Highland Elementary School in Sylvania with his mother, Linda, and brother, Joey, 11. Joey, also a Highland student, is one of Jimmy’s biggest helpers.
THE BLADE/DAVE ZAPOTOSKY Enlarge | Buy This Photo

Donations for the JimmyKare Fund can be made at Huntington Banks.

Benefit proceeds also are to assist in home modifications such as a wheelchair lift for the pool. Swimming is one of Jimmy’s favorite activities.

Mrs. Kolopajlo said she would like to have more than one wheelchair-accessible entrance in the home.

The family has built an addition that has a wheelchair-accessible bedroom and bathroom.

Jimmy is still a typical 9-year-old, teasing his older brother Joey, 11, and looking forward to playing with friends at recess.

Highland Elementary coordinated a buddy system to provide a companion who is with Jimmy, inside or outside during the lunch period.

One of Jimmy’s biggest helpers is brother Joey, a Highland student.

“It’s nice [the fund-raiser] and shows a lot of people care about him and our family,” Joey said.

To buy a ticket to the fund-raiser or for information, contact Ms. Hurley at ahurley00@yahoo.com or call 419-345-9811.

Contact Natalie Trusso Cafarello at: 419-206-0356, or ntrusso@theblade.com, or on Twitter @natalietrusso.



Guidelines: Please keep your comments smart and civil. Don't attack other readers personally, and keep your language decent. If a comment violates these standards or our privacy statement or visitor's agreement, click the "X" in the upper right corner of the comment box to report abuse. To post comments, you must be a Facebook member. To find out more, please visit the FAQ.

Related stories