Support for Nathan with OMS and Neuroblastoma

Nick and Danielle need your help.  Their 1-year old son, Nathan, has been diagnosed with Opsoclonus Myoclonus Syndrome (OMS or “dancing eye syndrome”) and a Neuroblastoma. OMS is a rare autoimmune disorder that attacks the nervous system.   In fifty percent of children diagnosed with OMS, the child has a neuroblastoma, a rare type of cancer.  This is what has happened to Nathan.Over the past couple weeks, Nathan has had trouble sitting up and crawling. He started developing a tremor in his arm. Most recently, his eyes began to dart around uncontrollably.  The symptoms left Nathan unable to sleep.  Nathan was admitted to the hospital earlier this week and he will remain in the hospital for a number weeks.  He has been started on an immunotherapy regimen and various medications to help his symptoms and immune system.  Doctors discovered a tumor in Nathan’s abdomen via an ultrasound.  Nathan will be undergoing a CT Scan and MRI in the next week or so to see if there are any other tumors.  Nathan will then have surgery to remove the tumor.  Once Nathan recovers from surgery, he will need to stay at the hospital to heal and continue immunotherapy treatments.  It is not clear yet whether Nathan will need to undergo chemotherapy as well.Nathan will need physical therapy, occupational therapy, and speech therapy along with needing to be followed by a number of specialists for an unknown amount of time to help him.  While the removal of the tumor will help Nathan’s symptoms, he will forever have the autoimmune disorder, OMS.  It is possible to go into remission with OMS by taking various medications, which include immunosuppressant and IVIG infusions.  Relapses may occur with illnesses in the future.Let’s help Nick and Danielle by easing the unexpected financial burden that a diagnosis like this can bring so they can focus their attention on Nathan.  Nick and Danielle will need to pay for medical expenses, meals, parking, and gas to get to and from Boston multiple times each week over the course of the next few months.  With time off from work, they may need help with bills.No child and no family should have to experience the stress and fear of having a child with a serious and chronic illness.  It takes a village to get through something this. Thank you in advance for any support that you can offer to Nick and Danielle during this difficult time.