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Baby’s Story

Welcome to Tell's CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.  OMS/OMAS is so very rare that it is also important for us to inform others of this awful disorder.  Thank you for your love and prayers!!  



Baby Jonathan "Tell" was born on July 20th, 2011.  Tell has three siblings.  Cassie(20), Jakey (3), and Colten (2).  Tell was a very normal 19 month old baby.  He loved playing with his brothers, playing with cars, and digging in the dirt.  April 1st, 2013 Tell was recovering from the stomach flu and was also found to have a double ear infection.  Tell was given antibiotics and sent home with lots of love and care.  April 5th, 2013 Mommy and Daddy noticed Tell was walking funny.  Tell's head was tilted to the right.  Tell was brought in right away that day.  Tell's ear infections looked great!  The antibiotics did their job, but something wasn't right.  Tell started shaking uncontrollably, his eyes started darting around in his head, vomiting and he seemed very angry at everyone.  The doctors decided to admit Tell to Childrens Hospital in Minneapolis, MN to observe him and run tests.  After a painful spinal tap, cat scan, MRI, and blood work multiple times.  They diagnosed Tell with Post Infectious Ataxia after several days.  Basically meaning that a viral infection had gone to his brain.  The treatment for this is time and he would make a full recovery!  Tell was released on April 8th with no treatments.  Mommy and Daddy were told things would be up and down with Tell.  Good days and Bad days.  Tell started to improve!  Shaking slowed down and his eyes were able to focus more.  Tell was doing great until April 22nd when everything changed.  Tell became more lethargic, shaking became very severe, Tell's eyes were darting around in his head, eyes also rolling into the back of his head, he was crying 24/7 and inconsolable, throwing himself in different directions, and stopped walking, crawling, sitting up and even at times was not able to hold his head up.  Tell was brought back into Childrens Hospital immediately.  Tell was readmitted and began to be the talk of the hospital from that day on.  Repeat tests were done.  Another spinal tap, CT scan, MRI, etc.. all looked the same as the first.  Rounds of specialists visited on a daily basis, interns and nurses would come in to take a peek at the little boy with the unknown illness.  After speaking with a specialist out of Illinois, and explaining Tell's symptoms he was officially diagnosed.  April 24th, 2013 Tell was diagnosed with OMAS. Opsoclonus myoclonus Ataxia syndrome.  Also known as OMS.  A very rare condition that happens in ONE out of 10 MILLION children.  Most doctors haven't even heard of this, or know how to treat him.  Most insurances haven't heard of OMS, so they fight payments.  And the needs of Tell are overwhelming.  OMAS/OMS has no cure.  We are on a learning journey.  We know very little about OMS/OMAS.  But we know Tell is on a forever journey.  This is his story...