Friday, January 7, 2011

happy birthday john bear

today is an incredibly special day in my family's life. today, two years ago, my nephew john was born. besides the obvious, you may wonder why it is so special. you see, this boy wasn't supposed to make it this long. he has surpassed so many odds. he is OUR miracle boy. and i love him more than words can be expressed.

you see, john has menkes disease. menkes is caused by a defective gene that regulates the metabolism of copper. most babies are not diagnosed at birth because there are no signs. somehow, we received some signs. my sister and my mom were diligent in getting an answer and while it was not the answer we wanted, he has received copper infections almost all his life. and he is walking, blowing kisses and loves his new baby sister.

and we love him. so much. and he has touched the lives of so many people. his smile lights up the room. his laugh is adorable. and he is and always will be my inspiration. he is a fighter. i always say he got that from his jones side : )

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