Hi Retta: I saw the Today show piece, and you are such an inspiration. A month ago my 3 year old girl, Ellie, was diagnosed with a rare genetic disease affecting her brain. I am told by experts there is no cure or treatment. It is much different than what your children have, but it does affect motor skills and eventually children with Ellie’s disease are supposed to be paralyzed. She is not expected to live past her teens. I noticed her symptoms actually get better as the day goes on. As my husband puts it, she “gets her sea legs.” I was wondering if I could email you off line to get some advice on how to push the doctors for more or different answers. Thank you so much. Ellie’s mom – BETH |