Friends of Tyler Stenger

Tyler Stenger is an amazing four year old!  He is the youngest son of Ted and Mary Stenger, and the brother of Justin, 10, and Jeremy, 6.  In his four years, Tyler has endured more surgeries and procedures, more test and needles, more poking and prodding, than most of us will experience in a life time, and he does it with the most beautiful smile you’ll ever see.

Tyler has battled respiratory issues since birth.  It wasn’t until July, 2007, that he was diagnosed with Chiari I Malformation which is a condition where brain tissue protrudes into the spinal canal. Normally, although present from birth, Chiari does not show symptoms until adolescence or early adulthood, and can be treated with a decompression surgery.

It would soon become apparent that nothing in Tyler’s journey would be “normal.”  His Chiari was complicated by his ongoing respiratory issues which made the battery of pre-operative testing—critical for a successful surgery—near impossible to complete.  Finally, it was decided the need for the surgery outweighed the risk, and he was admitted to the University of Iowa Medical Center.  On December 6, 2007, the surgery was performed.  After two weeks, Tyler was transferred to Children’s Memorial Hospital in Chicago which was an easier—but still lengthy—commute for Mary and Ted who live in Genoa City, Wisconsin. 

The decompression surgery was successful, however, Tyler’s recovery has been plagued with complications and setbacks.   He was unable to sit up for any length of time and could not swallow.  His airway would become blocked and he was unable to breathe.    Ultimately, it was necessary to put a trach and G-tube in place with the hope that it would provide him the nourishment and mobility necessary to participate in the rehabilitation therapy he desperately needed.

Slowly, Tyler has been making progress.  What was initially believed to be a one to two week process has turned into a life changing event.  On April 8, he left the Rehabilitation Institute of Chicago to go home for the first time in four months.  With the assistance of home based nursing, he will maintain his rehabilitation and therapy schedule.  His condition requires that at least one of his parents, or someone certified in all his apparatus, be with him at all times.  He continues to struggle with unexplained vomiting and the inability to eat or swallow, but has adapted to life with the trach, G-tube, and nightly ventilator, and maneuvers like a champ in his new walker.

Ted returned to work on April 14, which will help the family financially, however, insurance benefits don’t event come close the covering the cost of Tyler’s care and therapies.  Doctors recommend that Tyler have 16 hours of nursing care a day, however, insurance only covers 16 hours a week.   In addition, the enormous medical expenses he has already incurred have nearly depleted Tyler’s life time  insurance benefits.

Tyler’s journey will continue to be a long and challenging one.  Success will be measured in baby steps, not strides.  Each day brings progress from pain, and triumph through perseverance, and Tyler tackles each one with strength, courage, determination, and the most beautiful smile you’ll ever see.