‘He’s changed me as a person’
BY MIKE NOLAN firstname.lastname@example.org November 29, 2012 4:08PM
Timmy Matykiewicz, 7, (foreground), who has a rare condition called Duane-radial ray syndrome, was granted his wish to visit Disney World and other nearby theme parks with his family by the Kids Wish Network. | Brett Roseman~Sun-Times Media
Updated: January 1, 2013 6:03AM
Each time Timmy Matykiewicz is wheeled into an operating room, his mom gives him a little wave. In return, the Orland Park boy flashes her a twin “thumbs-up” to let her know everything will be fine.
In the seven years of his life, that reassuring exchange has happened 19 times.
Diagnosed with Duane-radial ray syndrome — a condition so rare that scant research on it exists — the boy has days filled with visits to various doctors and therapy sessions, all of which he endures with an ever-present grin. A second-grader at Orland’s Park School, Timmy gets the rock star treatment from fellow students, his mom, Amy, said.
“He is the absolute happiest, most easygoing boy,” she said.
Matykiewicz and her husband, Tim, have four other children, ranging in age from 1 1/2-year-old Jacob to 9-year-old Kassidy. Getting away for any sort of family vacation is next to impossible, she said. Timmy has three hours of occupational, physical and speech therapy each Saturday and sees four specialists, meaning there are few weeks when he doesn’t have a doctor’s appointment, his mom said.
“I think the longest we’ve been gone was three days in the Wisconsin Dells,” she said.
That changed recently when Kids Wish Network granted Timmy’s wish to go to Disney World with his family. The Florida-based organization grants wishes to about 175 seriously ill children each year, and along with the Magic Kingdom, the Matykiewicz family — Amy’s mom and Tim’s parents went along — spent five days in October visiting Universal Studios and Disney’s Hollywood Studios.
To be considered for the all-expenses-paid trip, the family had to compile extensive paperwork pertaining to Timmy’s health issues and obtain notes from his doctors. Matykiewicz said she and her husband learned in June their son’s wish had been granted and had to keep it a secret for weeks.
The day they were leaving they woke the kids at 2:30 a.m., with the bleary-eyed brood greeted by Mom and Dad wearing blinking Mickey Mouse and Minnie Mouse ears. The drive to the airport was boisterous as the kids realized where they were going, Matykiewicz said.
Prior to the trip, she had spent a lot of time online researching the best strategy for tackling the theme parks, trying to maximize the family’s time there. Their day at the Magic Kingdom, for instance, started before the park opened at 8 a.m. and didn’t end until it closed at midnight, Matykiewicz said.
“I had every single second of every day filled,” she said. “I knew this was our Disney trip, and it was unlikely we would get back there anytime soon, if ever.”
‘A work in progress’
Duane-radial ray syndrome is a disorder that, among other things, affects the eyes and causes abnormalities of bones in the arms and hands, according to the National Institutes of Health, which notes that just a few cases have been reported worldwide. Matykiewicz said the geneticist the family has been working with at Advocate Children’s Hospital in Oak Lawn never before encountered a patient with the syndrome.
In granting Timmy’s wish, the Kids Wish Network noted he’s undergone 19 surgeries and more than 20 other procedures, including corrective surgery for club feet and palate reconstruction.
“He’s been a work in progress for seven years,” his mom said. “Every time we do a surgery, I’m hopeful it’s the last one.”
His most recent operation, at Chicago’s Lurie Children’s Hospital, came six weeks before the family’s trip and was intended to improve his speech ability.
Matykiewicz, an operating room nurse at LaGrange Memorial Hospital, said she’s become an advocate for her son.
“He’s changed me as a person,” she said. “I am so much stronger because of him.”