Bravely Battling Opsoclonus-Myoclonus Syndrome and Neuroblastoma...
Connor's Corner
Sunday, June 15, 2008
Happy Father's Day!
Here it is! "Our D-A-D-D-Y Project" Ready to be put in a five section frame, as soon as I locate one, lol. Happy Father's Day Sam-you never fail to amaze me with the love you give to us every day. I love you! Debbie
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 The immune system can be activated as medicines are withdrawn, or if the child comes down with a cold or fever.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).
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