Emme is not your typical teen, while she’s excited about planning her future, it’s the past that’s made her journey to get here more difficult. Diagnosed with OMS at the age of two, Emme knows the importance of appreciating the simple things. This is Emme’s OMS story in her own words.

“In September 2004, my life and my family’s life was forever changed. I was a normal two-year-old, running, talking and feeding myself, but that all changed in the matter of a weekend. Suddenly, I could no longer sit up on my own, feed myself or talk. These symptoms instigated a whirlwind of visits to doctors and specialists and a multitude of tests. It took a while, but I was finally diagnosed with Opsoclonus Myoclonus Syndrome, an autoimmune disease that attacks the brain.

OMS is so rare; it affects approximately one in ten million people per year. Half the time, OMS begins with a tumor of the nervous system called a Neuroblastoma. After undergoing a series of tests, the doctors determined I had a cancerous golf ball-sized tumor just above my adrenal gland. I had surgery, chemotherapy, and other treatments that lasted for years. At age seven, I was cancer-free but still had to battle OMS.

Little did I know it was going to take forever to find the right treatment. It was a type of chemotherapy called Ofatumumab. I went through immunosuppressive treatments, which worked for a while but caused symptoms like migraines and required blood exchanges. That led to multiple surgeries, including a procedure to insert a central line and ports. The need for more chemotherapy ended with me going into anaphylactic shock. I was later diagnosed with depression and anxiety and fell behind in school. I had a hard time making friends.

Today as I approach my 18th birthday, I can honestly say, I’m the happiest I’ve ever been. Even though I lost myself in the process of battling this disease, it’s also allowed me to discover who I really am. Next year, I get to live out my dream of attending the University of Cincinnati. While the treatments will continue, I know the importance of staying positive. I always tell others struggling with OMS, the battles you fight can be rough, but you will always be a warrior!”

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.