BENEFITING: Transverse Myelitis Association
EVENT DATE: Oct 06, 2013
32 days after complications with vaccines and an ear infection, Drew crashed to the floor paralyzed (we didn't know this at first as he was so young and could not talk, he would just cry). We were not aware that his spinal cord was inflamed and attacking itself, shutting down all bowel and bladder function. Finally after 4 days of incorrect advice from the same pediatrician, Drew was "saved" by a wise pediatrician who had us rush to the hospital. After 10 days in two different hospitals confirming the same diagnosis of Transverse Myelitis, we were left with this rare neuro-immunological disorder and all of it's side effects (incomplete paralysis, limited mobility, neurogenic bladder and bowel, autonomic dysreflexia, and more). Our baby was suddenly fighting to move, urinate or have bowel movements on his own. We were all changed forever.
After hundreds of hours of therapies, hosital stays, and specialist appointments, 5 years have passed and we've all grown stronger. Drew continues to face challenges head on and persevere usually with a smile. He continues to endure his limited mobility and internal issues, but longs to be "normal" most days. He enjoys the same activities most kids his age do, he just participates with different equipment in a different way. Still with the same eagerness, feelings and thoughts all 6 year olds have, he just has more on his "plate" in his complex situation. We like to say he has "differabilities" instead of a disability.
We are also doing this campaign to help raise awareness and raise funds for research so this won't happen to someone else baby, or brother, or sister, or parent. Transverse Myelitis can happen to anyone at any age. The quicker it is recognized and diagnosed, the better the prognosis. For quick diagnosis, we need a lot of education spread to communities, doctors and hospitals. Please show Drew your support as he continues to fight this challenge after 5 years.
The goal of the Illinois Walk-Run-N-Roll Campaign is to increase awareness and raise funds for research and programs for individuals and their caregivers suffering from the whole life altering Acute Transverse Myelitis (TM) and Recurrent Transverse Myelitis, and other rare immunological disorders. We hope to raise awareness so someday Emergency Staff will know exactly how to quickly diagnose and treat a child or anyone who comes in paralyzed from the neck or waist down with loss of bowel and bladder sensation so that their prognosis is positive. Our hope is that soon the diagnosis of Transverse Myelitis or NMO will be as well recognized as MS or Parkinson's.
The first annual Illinois Walk-Run-N-Roll for the Transverse Myelitis Association (TMA) will begin with Registration from 10 to 11 a.m., followed by the Walk-Run-N-Roll and a Post-Walk Celebration. It will be held at beautiful McCollum Park, 6801 South Main Street, Downers Grove, IL. Proceeds will benefit TMA's research and service programs for people with TM, NMO, ON and ADEM. We have reserved the large Picnic Pavilion which is adjacent to a 1.2 Mile Paved Path and a Playground with ADA- and CPSC-compliant play equipment. Major highways, including I-355, I-55, I-294 and I-88, are nearby.
Everyone is invited to register, donate and spread the word. Teams are now forming. For information, contact Liz Beutel at firstname.lastname@example.org or (773) 425-7955. Sign up before September 1st to get the First Annual TMA Illinois Walk-Run-N-Roll T-Shirt!