Sages fight with OMS
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I am the mother of a beautiful and energetic 2 year old girl named Sage Elora. Sage lost her ability to walk in September 2015, she was shaking, falling over and her eyes were darting back and forth. She was diagnosed with Opsoclonus Myoclonus Syndrome (OMS) a rare autoimmune disease where the body creates antibodies to fight off the cancerous tumor (neuroblastoma) found on her adrenal gland, some of these antibodies get confused and attack the brain, resulting in her neurological symptoms. Only 1 in 10 million children get this disease and these children are often referred to as "OMS Warriors". We are thankful that the cancer was found early and sage has had the tumor removed but it is the lifelong struggle with OMS that worries us.
Sage finished with her chemotherapy last month but will be doing the IVIG treatments for the next 6 months and she is currently on Prednisone to lower her immune system and get it to calm down. I recently learned that the relapse rate for OMS while using Prednisone is 67% and relapses are harder to come out of and more drugs are often needed. I recently started noticing sages eyes beginning to dart back and forth again. The movements are so quick and hard to see but there is something I am noticing. Every relapse of OMS is inflammation on the brain and causing brain damage.
There is a specialist that I found in Orlando, Fl and I would like to take Sage to see him. Talking to this Dr on the phone I found out that there is a better steriod to be on that has a lot lower relapse rate. This disease is scary and overwhelming and I want to be on top of this from the beginning.
Sages father and I are asking for funds to be able to take sage to see this Dr in Florida and the sooner the better. We need enough for air fair and hotel. There is also an OMS conference in LA in March and if we raise enough money I would like to attend that as well, the treatment plans are often changing and there are not enough doctors that specialize in this terrible disease.
Sage is such a strong sweet little girl and I know she will get through this we just need a little help to get her the right care she needs. We would appreciate any help we can get. I had mixed feelings about raising money but need to get sage the best help I can get her right now.
Sage finished with her chemotherapy last month but will be doing the IVIG treatments for the next 6 months and she is currently on Prednisone to lower her immune system and get it to calm down. I recently learned that the relapse rate for OMS while using Prednisone is 67% and relapses are harder to come out of and more drugs are often needed. I recently started noticing sages eyes beginning to dart back and forth again. The movements are so quick and hard to see but there is something I am noticing. Every relapse of OMS is inflammation on the brain and causing brain damage.
There is a specialist that I found in Orlando, Fl and I would like to take Sage to see him. Talking to this Dr on the phone I found out that there is a better steriod to be on that has a lot lower relapse rate. This disease is scary and overwhelming and I want to be on top of this from the beginning.
Sages father and I are asking for funds to be able to take sage to see this Dr in Florida and the sooner the better. We need enough for air fair and hotel. There is also an OMS conference in LA in March and if we raise enough money I would like to attend that as well, the treatment plans are often changing and there are not enough doctors that specialize in this terrible disease.
Sage is such a strong sweet little girl and I know she will get through this we just need a little help to get her the right care she needs. We would appreciate any help we can get. I had mixed feelings about raising money but need to get sage the best help I can get her right now.
Organizer
Larissa Manning
Organizer
Portland, OR