Whether you are a Yalesville Alumni or a member of the fife and drum corps community, then you most likely know Jonathan's family. Please read on and find it in your heart to help...
Jonathan is the great-grandson of Eleanor Borek, long time director and instructor for the Yalesville Jr. Corps. He is the grandson of Dan and the late Donna (Borek) Murphy, both members of the former St. Paul's Drum Corps, great-nephew to Lori (Borek) Paul, long-time member of the Yalesville Corps and current member of The Connecticut Blues Drum Corps, nephew to Colleen (Murphy) Tondalo, Yalesville fifer and son to Paul and Bonnie (Murphy) Narducci. Bonnie is and has been a fifer with Yalesville for many years.
On May 16, 2003 and at the age of seven months old, Jonathan was a laughing, smiling child who was full of energy that morning, until hours later when Jonathan and his family would be changed forever by a silent, cruel and little known disease. His little body became limp with labored breathing and he was rushed to Yale New Haven Hospital's Emergency Room with Mom and Dad by his side. The fight to save his life that night was to be the first battle for his family. Since then, each of Bonnie and Paul's long days have been filled with fear, love, pain, signs of hope and uncertainty. Through the strength of their love as a family they have been coping as best they can.
Jonathan was diagnosed with Acute Transverse Myelitis, a rare neurological syndrome caused by inflamation of the spinal cord. Doctors believe that Jonathan's own immune system attacked his spinal cord while fighting off a routine childhood virus. As a result of this syndrome, Jonathan has a tracheotomy and is on a respirator 16 hours a day to help him breathe. At a time in a child's development when exploring the world through movement is such a joy. Jonathan has been paralyzed from the neck down, is unable to cry audibly or speak and receives his nutrition through a feeding tube. Jonathan spent nearly one year in the hospital at the onset of his illness and now receives round the clock care from his parents, great-grandmothers, family and friends at home.
Jonathan's prognosis is uncertain. Bonnie and Paul are very private and humble people, and therefore it is difficult for them to ask for help. Unfortunately, the realities of Jonathan's long term care are ever present and that is why they have found it necessary to turn to friends, family and their community for support. In 2004, a fund was set up to help Bonnie and Paul cope with the financial aspects of Jonathan's needs. Non-tax deductible contributions may be made by sending a check or money order payable to:
The Jonny Jar
c/o Webster Bank
64 South Main Street
Wallingford, CT 06492
As of late 2005, donations to The Jonny Jar have helped Bonnie and Paul purchase a handicap accessible minivan, take a trip to the Krieger Institute in Baltimore, MD for medical evaluation and pay for medical expenses not covered by insurance.
Jonathan turned three in October 2005. He is a young boy who enjoys puzzles, books, trucks, trains, music and especially his family. He has already learned to identify colors, ABC's and numbers from 0 to 10. Jonathan is preparing to go to preschool in April 2006 and his teacher has been coming to the house every week to work with him.
Jonathan has begun to shake his head "yes" and is now moving his shoulders! These are incredible achievements for him. Although Jonathan still has a trachea in place, he is beginning to verbalize. He says "AH" when indicating yes, and shakes his head to communicate "NO". Jonathan continues to work with therapists three times a week. He works very hard in every session and has been able to stand and walk with assistance.
At home, Jonathan spends time in special stander, which utilizes gravity to strengthen his leg muscles, and helps strengthen his bones.
As Jonathan continues to grow, so do his needs. His doctors and therapists want him to be in an electric wheelchair by the age of four, which they feel is important for his growth and independence. Although this will be wonderful development for Jonathan, it presents some challenges for his family.
In order to accommodate Jonathan's growth, Bonnie and Paul's existing 900 square foot home, built in 1956, must be drastically changed. The hallway will be removed, and both Jonny's bedroom and the kitchen enlarged to give him room for mobility. The new addition will consist of an accessible bathroom for Jonathan, including specialized bathtub, roll-in shower, toilet and sink. Also, a new family room will be constructed and the old family room will become Jonathan's therapy room. These renovations will give Jonathan the ability and freedom to move himself easily throughout the house.
The cost of this project is estimated at $100,000 and construction is slated to begin in Spring 2006. Please find it in your heart to help Jonathan's family. They are hopeful that through donations, they will be able to raise the funds necessary to make this renovation a reality. Like all parents, Bonnie and Paul love their son very much. It is important to them that they create a home environment that enables Jonathan to develop and grow into a happy, healthy and intelligent boy. We ask that you keep them in your prayers.
Thank you for taking the time to read about Jonathan's story. For more information on Acute Transverse Myelitis please visit:
www.myelitis.org