Ella Sullivan Fights OMS

In May 2014, in less than 48 hours our 2-year-old daughter suddenly lost the ability to walk. Three months, four hospitals, and several misdiagnoses later, she was finally correctly diagnosed with a rare disease called Opsoclonus Myoclonus Syndrome (OMS). OMS is a condition where the body creates antibodies to fight a cancerous tumor (called neuroblastoma), but some of the antibodies get confused and attack the brain, resulting in a suite of neurological symptoms including ataxia, chaotic eye movement, involuntary tremors, and fits of rage.

Only 1 in 10 million children have this terrible disease, and these kids are often referred to as "OMS Warriors". It is a long road to recovery. First you have to fight the cancer side of the disease, then you have to fight the OMS side of the disease and try to reverse the neurological deficits.

Ella has a long road ahead. She's already undergone surgery to remove the neuroblastoma from her abdomen, but more scans are needed to determine the extent of her tumor. She is undergoing an aggressive immunosuppression regime to try to stop the attack on her brain, and give her immune system a chance to reboot itself. Kids with OMS fight this disease for many years, sometimes for a lifetime.

Ella is an amazingly strong little girl, and we know she'll beat this thing. But she needs time. Your support will help us cover the cost of mounting medical expenses, travel back and forth to LA for treatments, and help us with costs of living expenses while mom can't work. While we have mixed feelings about raising money in this way, so many people want to help, and this is really the best way right now. We realize we've set a lofty fund-raising goal, but our future is unclear--we have no way of knowing how long it will take Ella to recover, or how long OMS will drastically impact our lives.

10% of the funds we raise will be donated to the OMS Children's Fund at Children's Hospital of Los Angeles.
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Organizer

Brian Sullivan 
Organizer
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