Hi Rory, I'm glad you found the list, though sorry you have to be here. My reason for being here is my daughter Caley who has partial tri 13. When she was born, they gave her a week, then a year and now shes 11. I know we are one of the lucky ones to still have our angel here on earth....though theres always room for hope. I don't have any experience with what Caris has, though a strong heart is a bonus!! Caleys major problems were/are her kidneys. She did have a few heart issues, ASD & PDA, though both have corrected themselves. She is non-verbal, mostly GT fed, at a 5-6 year level and runs the house!!!! We'll keep you in our thoughts. Where are you from? There are list members everywhere and they may know a good doc to see. Take care, Kerry, mom to Kyle 16, Courtney 14, Caley 11 (pt-13), Keenan 10, Kelin 8 & Connor 6 Visit Caley at: http://caleycaley.homestead.com My olympic pics: http://caleyolympics.homestead.com/caleyolympics.html Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line