I am a mom to a beautiful lil girl named Faith. She was born 8/16/07 @ 1:15p by emergency c-section. We finally got to meet our precious daughter at 9:30p that night and found out she was born with DORV/TOF w/VSD need heart surgery asap to repair. She was transported to Children's National Medical Center in DC on Sept. 8, 07 & had surgery on 9/11/07. DORV/TOF was repaired and since then has subsequently developed moderate-to-server diastolic dysfunction. Her other cardiac issues include history of postoperative ectopic atrial tachycardia which has been under control with medication and has been maintained on sinus rhythm.. Her medication has also helped with the Diastolic Dysfunction.. We were told the surgery was a success & Faith would be fine with some limits on sports when she was older & so-forth &, may need another surgery as she grows. As she was growing and more active I notice Faith turning blue again. After many Cardiac Catheterization it was confirmed. It was like reliving the nightmare from birth but worse. Faith was Diagnosed on 9/28/08 with Restrictive Cardiomyopathy RCM which is not repairable.. When she was 2 1/2 she went through a mild case of heart failure. That was the first time she was declined a transplant do to her developmental delays. We were told to pray and hope she pulls through. And we were blessed, our little fighter pulled through once again. We took Faith and had here re-evaluated 2 more times, again, no, she was declined. Now the will not even evaluate again until she is in need. The longest a child has survived with this defect is 10 years. She is 6, we do not know what the future holds for our little girl.. We are living, enjoying, cherishing and loving every minute. Faith is our world People look at children/adults with disabilities as they are from another world. It breaks my heart. I see how people look and point at my daughter or the looks they give when they ask how old she is and I tell them. She's disabled with a congenital heart defect, not an alien. Faith is my world