Help the Reutovs with their newborn daughter

When they were expecting they found out baby had heart, kidney and arm deformalites. Upon their daughter being born they suspect a rare genetic disorder called Cornelia De Lange Symdrome. 

Kiriakia Reutov spend 22 days in the nicu and is now baptized so the parents feel safe posting now.

Any help you can give would be greatly appreciated and will go towards medical bills, future prosthetics.