“Will had been a perfectly normal, happy baby until one day — out of the blue — he wasn’t. Our healthy boy, who had just mastered walking a few months before, suddenly lost the ability to walk, stand, sit, or crawl. He jerked violently, trembled and cried in our arms for hours on end for seemingly unknown reasons.

Days in the hospital turned into weeks trying to determine a cause. He was misdiagnosed twice before a neurologist finally suggested Opsoclonus Myoclonus Syndrome, simply because she had seen another case in a little girl the year before.

Now with a diagnosis, we started down the long road of treatment and therapy. Will endured years of steroids, infusions, chemotherapy and cancer drugs, x-rays and scans of every kind on every possible body part, daily injections, and trips cross-country to specialists and experts in this rare condition. He saw therapists multiple times a week for speech, occupational, and physical therapy. He endured more medical treatment and days in doctor’s offices and hospitals than most of us will see in our entire life, all before he was five-years-old.

Because OMS is an autoimmune disorder, Will is likely to struggle with the effects for the rest of his life. But thanks to a dedicated medical team and family and friends that supported him in more ways than we can count, Will has a shot at a healthy and productive life. He will still have cognitive and physical hurdles to overcome, but what he has achieved throughout his journey cannot be measured on a scale or aptitude test. OMS kids are resilient fighters that overcome obstacles in every direction. Will’s disease has taught him to be strong and to persevere. He has to work harder for things the rest of us take for granted, but he never complains, and his drive to succeed on his own is astounding.”

At Pirouline, we value hard work and dedication to family. That’s why we’ve made it our mission to support the OMS Life Foundation. The foundation was created to raise awareness about OMS, maintain a support network for caregivers, and fund research for a cure. It’s important for us to help support the young warriors and their families battling this rare disorder.