Opsoclonus Myoclonus Syndrome is an extremely rare auto-immune disorder that affects as few as 80 children a year in the United States. It is caused by a neuroblastoma, a cancerous tumor, or a virus. It is thought that antibodies in the immune system designed to fight off the tumor or virus end up attacking the brain as well.

The symptoms of OMS are frightening. A young child who is growing and developing normally suddenly begins to shake uncontrollably and has severe muscle and eye jerks. This soon leads to the inability to walk, talk, sit or even hold their head up. If not treated properly, OMS leads to severe behavioral problems and learning disabilities as well. The disease is not fatal but children with OMS suffer from permanent brain damage.

There is not cure for OMS. Several treatments including chemotherapy are used in an attempt to induce a neurological remission. Unfortunately, relapses are common. The immune system can be activated as medicines are withdrawn or if the child comes down with a cold or fever. The attack on the brain continues with each relapse causing further permanent brain damage.

Since it is so rare, neurologists may never see a case of OMS in their career. Most children with this disorder go undiagnosed for months or even years. Typically, 11 weeks elapse between the appearance of symptoms and diagnosis. An additional month or more elapses before treatment begins. The longer a child waits for treatment, the worse the prognosis.

Many of the children who have OMS experience brain damage that may cause learning and behavior problems and a significant drop in IQ. Some have tremors in their body for the rest of their life. Children with severe OMS are unlikely to achieve normal intelligence or independent living. These problems emphasize the need for early diagnosis and treatment.

In our effort to help the children with OMS, we have formed the Pediatric OMS Research Fund, a nonprofit 501 (c3) organization. OMS is so rare that is has been listed as an orphan disease on the National Organization of Rare Diseases with virtually no funding to support research. New treatments are currently being studied but are years away due to the lack of funding. We are in a race against time to secure these new treatments to stop the progressive neurological damage to our son’s brain and others affected by this disease.