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Edward J. Skelly, age 13, beloved son of Edward C. and Jeanette, nee Kretz; dear brother of Jacqueline; loving grandson of Joan and Robert Wojcik, the late Edward Skelly and Robert and Mary Kretz; nephew and cousin to many, an inspiration and teacher to all. Family and friends will be received at the Toon Funeral Home, 4920 Main St., Downers Grove, IL. Visitation on Friday from 3 to 9 p.m. Funeral on Saturday at 9:15 a.m. from funeral home to Devine Savior Church for 10 a.m. Mass. Arrangements entrusted to Conboy-Westchester Funeral Home. Interment Queen of Heaven Cemetery. In lieu of flowers memorials would be appreciated to the PMD Foundation, 6 Old Forge Cir., Hockessin, DE 19707. For further information, call 708-F-U-N-E-R-A-L. |
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| Published in the Chicago Tribune from 3/22/2007 - 3/23/2007. |
Eddie was born on April 8, 1993. That year it was a Thursday, Holy Thursday, just before Easter. I will never forget my feelings of panic as my mother spoke to her physician on the phone. She told him she was leaving for the hospital to have her baby. Then she proceeded to sit back down at the dinning room table with me to finish coloring Easter eggs.
Eddie was born that night & I finally had the sibling I always wanted! (Well, almost, he wasn't the sister I really wanted.) However, Eddie would spend almost 14 years showing me he was a much better sibling than any girl would have been.
A few months after Eddie was born he started to have problems reaching typical milestones. He was commando crawling, rolling over, & scooting around on his back all over the place and he could use the coffee table to pull himself to standing, but he wasn't able to sit without lots of support.
After many tests & finding different opinions (I will leave out most of the physician struggles), he was diagnosed with Pelizaeus-Merzbacher Disorder (we would later find out it was a Pelizaeus-Merzbacher like Disorder).
This meant he was born without much myelin around his brain & nerves. The myelin sheath helps messages move from your brain to other parts of the body.
For Eddie, this meant he used a wheelchair, was feed through a g-tube & after a few years had a trach-tube and could not talk.
Eddie spent much of his first years fighting pneumonias. He had his own room in the pediatrics department of Loyola Hospital. But through these years and all those following, Ed always fought.
Eddie went to school, movies, and did so many other things every kid does. We were both blessed to have such wonderful parents who would fight to ensure he was able to do these things if they had to (hm, for example, a certain school district comes to mind)(http://members.aol.com/cyclerac
In October/November 2006 we went on a trip to Walt Disney World (this was Ed's second trip to his favorite place on Earth) with most of our mom's family - it was aunts, uncles, & cousins galore!! We went to the Magic Kingdom & Mickey's Not So Scary Halloween Party, during which Ed got to see his big sister proposed to & tell his soon to be brother that he wasn't sure he wanted him to be his brother!
Not long after the Disney trip, Ed was unwell. Unfortunately, this was the only battle he ever lost and he joined the angels due to a kidney problem which could not be treated fast enough. He would have been 14 on Easter of 2007.