At Pirouline, we know that we have a platform to reach and impact others – and we want to do that, for the good for all. One cause we believe in is the OMS Life Foundation, and we love to celebrate the young warriors who have heroically battled this terrible disease.

Today we celebrate Cole – who is living an amazing and ambitious life, despite any setbacks, through one unique perspective: his mother’s eyes.

OMS Warrior: Cole

“In July of 2011, at the age of 15 months, Cole was diagnosed with a neuroblastoma and a rare neurological autoimmune condition called Opsoclonus Myoclonus Syndrome (OMS). His symptoms started with a viral infection and fever. He went from a happy, playful baby to an irritable toddler who could not sleep and could no longer crawl or sit up. His neurological symptoms continued to worsen over the next few days. His symptoms consisted of hand tremors, body tremors, ataxia, and erratic eye movements. He feared any kind of movement and would cling onto you while carrying him downstairs or while riding in his car seat in the car. It was devastating and heartbreaking to watch. He had even quit babbling in the mornings and quit rising to greet us in his crib.

I remember our world crashing down as we were given his diagnosis. We were told that most children with OMS develop cognitive disabilities and behavioral issues. Our son and family would be facing a long and challenging road with long-term deficits and relapses. We were also told that OMS is a rare condition that did not have much funding or research and no well-studied treatment protocol to follow. However, with the support of the staff and doctors at Dell Children’s in Austin, Texas, Cole was diagnosed and treated quickly. He was started on a series of immunomodulating therapies and immunosuppressants that would continue over the next 7 years. He is still currently receiving IVIG treatments due to side effects from his aggressive treatments early on.

After many years of speech, occupational, and physical therapy, and periods of isolation due to being immunocompromised, Cole is leading an amazing life. He is in a public school, in a regular class, with no accommodations and is at the level or even above level in some subjects amongst his peers. He is loved by all who know him and has many friends. He is involved in many activities, such as Cub Scouts, golf, and basketball. He dreams of one day going to his father’s alma mater, University of Kentucky and playing basketball.

This has been a long journey with many ups and downs. I feel this journey has given him an old soul with a heart of gold. He is cautious and empathetic and puts others before himself. He doesn’t look for the thrill of things. He prefers to keep his feet planted solid on the ground. He doesn’t ride roller coasters or go down tall water slides. He doesn’t like to ride bikes or rollerblades. Sometimes we question if it is because of what he has gone through or if it is just who he is.

We still hold our breath if we hear him cough or notice him tripping or notice he is too quiet, but we have never lost hope. With every sad tear we have shed, we have also shed tears of happiness; happiness for watching our son do some of the simplest things in life that many others take for granted. Never lose faith. Never lose hope. {I tell you, therefore: Everything you ask and pray for, believe that you have it already, and it will be yours- Mark 11:22-25}.”

– Christy, Cole’s Mother