Pirouline strives to bring awareness and raise support for the OMS Life Foundation, and we want to continue to encourage our fans to join the fight by sharing one warrior’s story at a time.
Meet OMS warrior Ella!
We feel privileged to share Ella’s story and celebrate her, along with all of the children fighting this disease.
“In May 2014, in less than 48 hours our 2-year-old daughter, Ella suddenly lost the ability to walk, then lost the ability to sit up and then talk. Three months, four hospitals, and later, she was finally correctly diagnosed with a rare disease called Opsoclonus Myoclonus Syndrome (OMS). After a long 3 years of intensive medical treatments, including monthly IVIG infusions, surgery, chemo and steroid doses, she went into remission in the summer of 2017. Since then she’s been off all OMS treatments, but every day we see the adverse long-lasting effects of OMS in her daily life.
The biggest and best news is that Ella was able to go to school in 2017 and be around kids her age, finally learning how to socialize and make friends. She successfully completed kindergarten last year and while there were ups and downs, moments of sheer joy and true sadness, tons of colds, bumps and bruises–her OMS symptoms never reached a level of needing another treatment. Due to OMS, she has setbacks in several areas, both physically and cognitively, and she struggles to keep up with kids her age in many ways. But every day she continues to amaze us with her bravery, compassion, and smarts.
This spring Ella will finish 1st Grade, and we couldn’t be more proud of this little one. We can thank everyone here enough for your support of us and for supporting the OMS LifeFoundation, which has been tremendously helpful to us and many other families facing this horrible illness. While OMS will always be a part of Ella’s life, we’re hoping it will continue to become more of a distant consideration rather than an everyday worry. We hope Ella can overcome the challenges she continues to face, and knowing her heart and spirit—there is hope.”