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Riley Shane' Story   — Diana Chenoweth, MI, USA

I am going to tell you a story about Riley Shane, my grandson. Riley was born 1/5/2005 and died 12/27/2005. My daughter, Riley's mom, is 21. As many stories I have read, Nicole also had a fairly normal delivery, was tested for GBS, and, as many others, was told in no uncertain terms, "nothing to worry about, no big deal." Riley was born blind, never had even 2 hours at a time without a seizure, and lost more than 50% of his brain. But...... we still had faith, my 21 year old daughter took care of him around the clock 24/7, feeding him every 3 hours, holding him nonstop, singing, playing music, setting him in front of the t.v. to hear Baby Einstein videos. How could he not get better? He did not. In November we finally had to submit to allowing a tube to be inserted for feeding and from that point on he failed. After Thanksgiving we brought Riley home from the hospital. Within a few days we had Hospice coming to our home. I planned Riley's funeral 4 weeks before his death, recommended by Hospice, to take some of the burden off of us when we would really need time with each other. Riley died at home in his Grandma's bed. He was surrounded all night by family and the closest of friends. I watched my baby girl hold her baby boy, clean him up, change his clothes, and then hand him over to be taken away. At his funeral the director said he had never seen such a huge funeral for someone who was on earth for such a short time. Riley touched so many people. He was so loved. This should not have happened to Riley, to my daughter, to any of us. How in this day and age can something that can be treated be so neglected? I ask myself this daily. I keep all of you in my prayers and my thoughts.

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