I am getting ready to get Lizzy her treatments and I have been thinking about some things. I need to vent some more. You know there our very bitter people in this SMA World and it upsets me because their children feel how bitter they are. I am not talking about the parents that have lost children due to this terrible disease. To lose a child to such a disease would totally tear a person's heart in half. I am talking about the parents of these kids that are living . It saddens me that a child must feel bad about themselves because every day a parent comments on how mad they are their child has this terrible disease. We hate SMA but we live life to the fullest for Lizzy. We so want to give Lizzy the best quality of living we can. No one is responsible for this disease and so people need to quit blaming their selves , their spouses and get on with life and do the best job you can do caring for these kids. Yes, I hope the government passes this bill to help find way to treat and cure this disease !! So many babies and children have passed away. Every time child passes from this disease another piece of my heart hurts. But ....I am not so absorbed in hating this disease that it takes my passion and my direction away to help Lizzy . I do the best I can for her. She is my focus and all the kids helping the ones that are living, live the best quality of life they can. I have been judged lately because people say I have "accepted "our life. I have not accepted it I just do not dwell on it. I deal with it. I do what I can do for these kids. I get VERY upset when parents DO "Nothing "to help these babies /kids when they now there is interventions out there to help.

I just do what ever I can do for Elizabeth. To keep her smiling and happy. You know its the" now" they are living . My life is not going to sit still and wait for a cure. Help these kids now with interventions so if a cure or treatment does come we will be ready. What I am trying to say. Is I do what I can do and make life as happy as possible for Lizzy safely.She is my life, my heart, my hero and my light. Please think before you speak negative in front of these kids. They are smarter than you think.Thank you all that helped me with Lizzy!! I am so proud of Lizzy and all she can do. Those eyes that smile makes my life worth living. I am NOT afraid to say it either. I will say it again. I AM PROUD OF ELIZABETH AND EVERYTHING SHE CAN DO!!!! God Bless