While we are still new to the OMS family, we are happy to help increase awareness to this rare neurological disorder in any way that we can. Please consider signing this petition to make January 6th National OMS Day.
The Rhythm of Life Project wants to establish January 6th as National OMS Awareness Day! OMS is believed to be a neurological auto-immune response in which the bodies own immune system wages war on the patients brain. OMS is typically triggered by a presentation of Neuroblastoma or a virus. It affects only 1 in 10 million. It is vitally important for these kids to have early diagnosis and intervention to avoid long term treatments and brain damage. OMS is so rare that most doctors don't even know what it is, never mind how to treat it. We want to award one day out of a year for every person reachable to be reminded that these kids are fighting for their lives, while the world just rumbles on around them. We chose January 6th as the day we'd like to make OMS Awareness Day in honor of Zoe Cadence (whom the Rhythm of Life Project is named after). She was diagnosed January 6, 2006 and continues to fight with no remission accomplished yet. It is her fighting spirit that keeps us focused on finding a cure and spreading awareness. www.omsawareness.com
Part of Keira's cancer follow up is that she will have periodic MRI's to confirm that there has been no growth in the area where her tumor was resected. For the first few years this will happen every 3 months. We knew that no news was good news but thought that we should let everyone know that there was NOTHING to see. Dr. Effinger told me that she went down to radiology to see the MRI with her own eyes. :) Keira's next MRI will be in April.
We celebrated NYE at home this year and ended up having a lot of fun. Keira and I made cookies and party hats while Naveen made us a very fancy dinner. We celebrate the arrival of 2011 with the East Coast, ate cookies and ice cream and then put the little one to bed. 2010 was a year full of the unexpected for our family. We feel so blessed to have such supportive family and friends and home that this next year will bring our little girl good health.