Bravely Battling Opsoclonus-Myoclonus Syndrome and Neuroblastoma...
Connor's Corner
Monday, August 3, 2009
July Pics...
We had some fun while dealing with the happenings with Connor at least. We went to Orlando and enjoyed Universal Studios, Downtown Disney, and the drove over to Cocoa Beach...did some shopping at the outlets there, and took some down-time from the dreaded word stress, lol. The kids had fun most everywhere, although Connor stayed in his stroller for most of it. Here you go:
Hello guys - wow looks like you had an awesome time , and Connor looks so grown up !! Wow the photos are really cool , hope one day we can get to do to Disney and Universal and Sea World to! Sending you hugs and prayers from South Africa! God Bless love Samm Mark Deqlan Logan
Opsoclonus Myoclonus Syndrome is an extremely rare auto-immune disorder that affects as few as 80 children a year in the United States. It is caused by a neuroblastoma, a cancerous tumor, or a virus. It is thought that antibodies in the immune system designed to fight off the tumor (or virus) end up attacking the brain as well. The symptoms of OMS are frightening. A young child who is growing and developing normally suddenly begins to shake uncontrollably and has severe muscle and eye jerks. This soon leads to the inability to walk, talk, sit or even hold their head up. If not treated properly, OMS leads to severe behavioral problems and learning disabilities as well. The disease is not fatal, but children with OMS suffer from permanent brain damage. There is no cure for OMS. Several treatments, including chemotherapy, are used in an attempt to induce a neurological remission. Unfortunately, relapses are common. The immune system can be activated as medicines are withdrawn, or if the child comes down with a cold or fever. The attack on the brain continues with each relapse.
I am 36 years old and have a wonderful husband named Sam. We have four great kids...twins Ryan & Stacy (14) Samantha (6) and the baby Connor (3)We recently added a puppy to our hectic house (named Belle).
2 comments:
Hello guys - wow looks like you had an awesome time , and Connor looks so grown up !! Wow the photos are really cool , hope one day we can get to do to Disney and Universal and Sea World to! Sending you hugs and prayers from South Africa! God Bless love Samm Mark Deqlan Logan
I love, love, love the picture of Samantha with the parrots! :D
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