This was taken a few nights ago when we thought we had said our finally goodbyes. I will treasure this forever as it looks as though she was praying to our Father in Heaven. Maybe she was asking for more time or maybe she was asking to go Home. Either way I know He is right there with her and only He knows the plan.
Many of you are new and I thank you for the love and support. I've had a lot of you ask what she has. Charlee was diagnosed 1 year ago with Late Infantile Batten Disease (bdsra.org). When she was born we believed we had a completely healthy little princess. At 3 1/2 years of age she had her first seizure. Since then, we've watch her singing, dancing, talking, running, seeing and playing be taken away from her. She now can't do any of the above and has to be fed by GTube. Batten Disease is a genetic neurodegenerative disease. There is a buildup of substances called lipopigments, they buildup in cells of the brain and the eye, as well as in skin, muscle, and many other tissues.
We are just enjoying our time left with our Charlee and thank you all for sharing her journey with us.