We learned at 12 weeks after conception that our little angel, Elizabeth, had Trisomy 18 accompanied by an open mylo and other complications of this dreaded genetic illness. Most of these children live just minutes, hours or days if they even come to term. You have seen a Trisomy 18 child if you watched the clip "99 Balloons" recently featured on Oprah. That little boy had what our angel had and died at 99 days. Our little wonder lived to be 90 days old, and in that time we had a whirlwind experience. We could not have her picture taken in the NICU because of hospital policy. We brought her home with an open mylo and were told she'd only live 10 days. A month later she was gaining weight, smiling and grasping her toys. She loved being home. Right before we determined to whisk her away to CHOP to close her mylo, a miracle operation that was performed in January 2007 thanks to an amazing palliative care doctor, Chris Feudtner, someone told us about this charity. We were alre