1 in 10,000,000 Those are the odds of having Opsoclonus Myoclonus Syndrome (OMS), a rare paraneoplastic neurological disorder of unknown causes. It is characterized by associated ocular, motor, behavioral, sleep, and language disturbances. OMS appears to be the result of an autoimmune process involving the nervous system. Symptoms of OMS include rapid involuntary eye movement (Opsoclonus) along with brief, involuntary twitching of a muscle or a group of muscles (Myclonus). There is no known definitive cure for OMS. The onset of this disease can be a viral infection or a cancerous tumor, called Neuroblastoma. Antibodies created by its own immune system start attacking the body causing the symptoms of OMS.
Thomas Boley is not yet 2 years old and has been diagnosed with this lifelong disease. Thomas will have to be under a doctor's care for the rest of his life. He had a cancerous tumor successfully removed in February. With the help of daily medicines and shots (8 – 10 per day), along with monthly infusions and weekly chemo treatments, Thomas is again able to walk and his eyes have quit fluttering. His body is suppressing his immune system, allowing him to return to a fairly normal life. Specialists at a children’s hospital in St. Louis have suggested to his parents that he be taken to the nations’ leading authority on this disease. At this point, such a trip is simply not affordable for the family. Thomas’ dad is a teacher in the Affton School District. Tami, Thomas’ mother, has to stay home with him to give him the many medicines and treatments required to fight this disease.
The Thomas Boley Fund has been set up to help this family with the trip to the experts and the clinic devoted to this rare disease. We are hoping to raise money for this trip and other medical expenses incurred in keeping Thomas a normal a two-year old – as much as possible.
Thank you for helping us.