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Thursday, November 3, 2011

Rafer

video.  This is my grandbaby Rafer.  He was born with an extremely rare brain disorder called schizencephaly.  His family and doctors have been fighting for almost two years for him to be able to get this surgery he needs, to try and stop the seizures.  Becaues of the disorder he is blind and the seizures cause his brain to reset every time he has one, so it's hard for him to learn new things.  The insurance company has turned down the claim for the surgery, so we've been trying really hard to raise money so he can get the surgery he needs.  The day before the benefit myself and my daughter put on for him, his mom got a phone call from the military. (My son - Rafe's Daddy, was in serving in Afghanistan) The call was to let her know they had found a military doctor who has agreed to do the surgery without charge.  It's been something we've wanted so desperately for him for so long, it's still hard to believe it's actually going to happen!  The money we raised will be used for his care after the surgery, since the insurance won't pay.  Rafe's surgery is slated for November 17.  I'm beyond excited for him and for his parents, who fight for him and work hard to make his life as normal as possible, given all his difficulties. The military has actually brought Rafe's Daddy home from Afghanistan so he can be there for the surgery, so he's safe and sound at home with his family finally.  I love you Rafer and BJ and Laura...You are amazing parents to this beautiful little boy...i love you both so much!