“We are looking forward to the day Grayson kicks OMAS into remission.” – The Erbes Family

Four-year-old Grayson Erbes acts like your typical preschooler. He loves football, skateboarding, and playing outside with his brother and sister. But Grayson is far from ordinary; at just ten months old, he began a battle that’s “one in a million.” The Erbes family shares Grayson’s OMAS story.

“In March of 2016, we noticed Grayson’s eyes started moving back and forth in a rapid, chaotic manner. We went to our pediatrician looking for answers but left without a diagnosis. Grayson’s condition continued to decline rapidly over the next couple of weeks. Our happy baby became extremely fussy, sleepless, and wasn’t eating much. Then he started losing his developmental milestones; he could no longer sit on his own or pull himself up. He could no longer verbalize the words he just learned. Our normal baby was completely silent and only communicated with his smile. We were on the search for answers, which led us to the ER of our local children’s hospital

Our ER visit turned into a hospital admission for “further testing.” After numerous tests and conversations with doctors, the neurologist diagnosed Grayson with Opsoclonus-Myoclonus-Ataxia Syndrome(OMAS) — a neurological disorder that affects about one in a million people worldwide. Grayson was her first OMAS case in 15 years.

After receiving the devastating diagnosis, our neurologist referred us to the pediatric oncology department. Two days later, a Neuroblastoma tumor was found along Grayson’s spine.

These diagnoses set off a whirlwind of treatments, procedures, and surgery. Grayson was immediately started on IVIG and corticosteroids to treat his OMAS symptoms. A few days shy of his first birthday, Grayson underwent tumor resection surgery, and the surgeon was able to remove 95% of his tumor. Over the years, Grayson has also received adrenocorticotropic hormones, chemotherapy, and antibody therapy as well as speech and occupational therapies.

Today, Grayson still receives monthly IVIG treatments, But true to his nature, he hasn’t let that slow him down. We are looking forward to the day Grayson kicks OMAS into remission.”

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.