Our son Tony was a healthy and happy baby, but his life changed forever on July 8, 2003 when he was 20 months old. While eating breakfast we noticed tremors in his right hand. By the end of the day his whole right side was shaking. He was taken to the emergency room where an MRI and CAT scan was done which all came back negative. The doctors sent us home with a diagnosis of a post-viral infection saying he would improve within a few weeks. Unfortunately, within days, the tremors spread to his left side and Tony was soon unable to walk, crawl or roll over. He lost his ability to speak and was losing his ability to swallow. We also began to notice something wrong with his eyes. They seemed to be darting back and forth in his head as if he had no control over them. We took him back to the hospital where he was immediately admitted with a diagnosis of Opsoclonus-Myoclonus Syndrome (OMS).

OMS is an extremely rare autoimmune disorder. Its cause is unknown, but at least half of all cases are related to a neuroblastoma, a cancerous tumor. Tony has undergone a battery of tests including spinal taps, urinalysis and nuclear scans and currently no neuroblastoma has been detected. However, he will continue to be tested for the next few years to ensure no tumors exist.

There is no cure for OMS. Over the past 3 ½ years we have tried several treatments for Tony in an attempt to induce a neurological remission. He receives daily injections of a powerful hormone called ACTH which is suppressing his immune system in an attempt to save his cognitive abilities. In addition, he also endures monthly infusions of healthy antibodies, called IVIG. These infusions are administered through an IV and last up to 8 hours. We also made the very difficult decision to give Tony an experimental round of intravenous chemotherapy as well as a course of oral chemotherapy. We know that a tiny cold or fever could cause him to relapse by activating his immune system, continuing the attack on his brain. Due to these dangers, we are very reluctant to take Tony to very many places and even a trip to the grocery store could be dangerous.

Tony’s doctors are reluctant to give us a prognosis for him. Tony’s OMS has been classified as severe and those children have the highest risk of permanent neurologic problems. Many of the children who have OMS experience brain damage that may cause learning and behavior problems and a significant drop in IQ. He also may have tremors in his body for the rest of his life. We only hope that we caught his disease early and are treating it aggressively enough that he will be able to lead a normal and healthy life.

Despite all of this, Tony is having great fun and loves preschool this year. He is in a special-ed preschool where he receives speech, occupational and physical therapy. The areas Tony struggles with the most are speech and fine motor skills. He also receives additional therapy at home to help him in these areas. His medicines have caused Tony to gain a considerable amount of weight and cause violent mood swings which he cannot control. We will never be able to describe what Tony has been through. It is also not possible in words to explain how proud we are of him and lucky we feel to be his parents. Tony still remains a sweet little boy with a smile on his face and a heart filled with love.

Thank you for letting us share our story with you.