>> hermione. emmanuel is the syndrome. >> we will hope she does really well. it's interesting how they categorize certain diagnoses. "lethal diagnosis, incompatible with life." they need to stop using those words. and we are really on a mission now to help change the wording and how they give these diagnoses the parents. their mantra is to give the child a chance, see what the issues are, love and support the families. there's no doubt. we feel, as i'm sure you do, that it is an honor to take care of our little bella. she's an angel of heaven. .s is your little girl even she's worth the dignity of every other child. you may have to turn into a mama bear to get the care -- and i'm sure we could talk for hours. she has a happy, beautiful life. she is so joyful. initially, it was a challenge just getting the basic care. >> to answer your question more directly, to the extent that the parents can and should provide, that they can't, anytime there are extraordinary costs associated with a disorder, it should be socialized in a high risk pool at a state level, becau

>> hermione. >> we will hope she does really well.s interesting how they categorize certain diagnoses. "lethal diagnosis come incompatible with life." they need to stop using those words. and we are really on a mission now to help change the wording and how they give these diagnoses the parents. their mantra is to give the child a chance, see what the issues are, love and support the families. there's no doubt. we feel, as sure as you do coming is it is an honor to take care of our little bella. she's an angel of heaven. she's worked the dignity of every other child. utricle may have to turn into an mama bear to get the care, and i'm sure we could talk for hours. she has a happy, beautiful alive. initially, it was a challenge just getting the basic care. >> to answer your question more directly, to the extent that the parents can and should provide, that they can't, anytime there are extraordinary costs associated with a disorder, it should be socialized in a high risk pool at a state level, because of the instability of medicaid, som