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Post by lincldad on Jun 7, 2009 7:21:14 GMT -5
On Friday June 5, 2009 my daughter Sarah peacefully passed away and has been released from this disease. She is now free to do as she pleases. Thank you all here at the board for your comments and help. It was appreciated. I am always open to questions from anyone on my experiences. I know that while battleing this any input on Batten's disease can be worth something so don't hesitate to ask in an email. Sincerely, LINCLDAD Paul Whelton
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Post by nolansmom on Jun 7, 2009 15:02:44 GMT -5
Hi Paul, first I want to say how sorry I am for your loss. Regardless of the circumstances, I am sure it is still very difficult. I also want to you to know that you and your family are in our thoughts and prayers.
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Post by corrina on Jun 8, 2009 10:47:17 GMT -5
I am so sorry for your loss. You and your family will be in my prayers.
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Post by nikkiv on Jun 8, 2009 12:06:01 GMT -5
My prayers are with you.
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Post by kegcam on Jun 9, 2009 8:53:25 GMT -5
I am very sorry for the loss of your precious little angel. May she rest peacefully in the arms of the Lord. And may you find peace and strength knowing she has been healed. My cousins little girl has batten's disease. I was unaware of it until her diagnosis. I am now doing whatever I can to learn more about it. God bless you during this difficult time.
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Post by katarina calderon on Jun 9, 2009 9:36:20 GMT -5
I am very sorry to learn of Sarah's death. I know you have been living and coping with this disease for a long time, much of it as the sole care giver. I hope that you are able to take good care of yourself during this difficult time.
Tell me, did you manage to go home, or did Sarah die in hospital?
My thoughts and heart are with you.
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Post by lincldad on Jun 12, 2009 7:11:45 GMT -5
Thank you for your thoughts and prayers.
We stayed in the hospital. In our particular situation, It was best, I didn't want to be totally alone (medicaly speaking). The hospital, finally-after much balogny- gave us a few days of decent privacy. We had our pedi by our side.
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Post by Peggy D on Jul 4, 2009 6:43:43 GMT -5
I am sorry for your loss of Sarah. It is never easy, and I know you dealt with this as a single caregiver on top of it all. I will keep you in thought and prayer. In peace, Peggy
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