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Zanes travel fund to seek treatment for OMS
$700 raised
29 contributors
0 days left
Ended Jul 12, 2014
Zane was just diagnosed with Opsoclonus Myoclonus Syndrome. Our doctors here in Milwaukee don't know enough about the syndrome to treat it. It is not cureable, but with treatment can improve the quality of his life. We need to travel to see one of ...
Zane was just diagnosed with Opsoclonus Myoclonus Syndrome. Our doctors here in Milwaukee don't know enough about the syndrome to treat it. It is not cureable, but with treatment can improve the quality of his life. We need to travel to see one of the three specialists who even treat this syndrome. Opsoclonus Myoclonus happens to only 2-3% of patients with neuroblastoma. Basically in a nutshell it is an auto immune disease where his immune system is attacking his brain. His body built up antibodies to attack his cancerous tumor but when the tumor was removed it started attacking similar nerve tissue which is his brain. His treatment would involve a hormone shot daily, IV bag of human antibodies to give his system something else to attack, and possibly chemo. There are tests he can only do that we don't have the technology to run here. If you would like to help please make a donation that helps with gas money, toll money, food while we're gone.... I don't know how long we will even be staying. He may have to be admitted to a hospital in order to get a spinal test done because he's a high anesthesia risk. Right now Im looking into driving him to Rochester, MN to the Mayo Clinic to do sleep studies, and blood tests to determine the best treatment plan for him. Hopefully that is enough to figure out what we need to do. Otherwise I'm also trying to set up something with an OMS Specialist in LA named Dr. Mitchell (I do not know if we'd be traveling to LA Yet... and I will try to also set up something called Miracle Flights to conserve on funds if we go that route) Thank you all for your continued support and loving thoughts and prayers for our baby, Zane.
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