This is just a sample of what Krabbe does. It's getting a little more difficult for Hayden to swallow like stated in this she will eventually forget how to. Hayden is on 6 medications, again like this stated if just one medication is missed she's in HORRIBLE pain. Well, she's in pain with or without medication when picked up, moved, or even changing her clothes. two piece items to wear in the formal occasions
New born screening is so important because it could give all these babies a chance at life. If caught at birth or before they are symptomatic a transplant could be done and could save their quality of life. ALL STATES NEED TO TEST AT BIRTH!