Hello my name is julie and my beutiful neice i alexis harless. She is a wonderful young 9 year old girl who was born 2 months early by emergency c-cection, as her fragile little heart kept stopping. with wonderful Drs. in tampa florida and lots of prayers, lexie pulled through, against all odds. as far as we know, there is no reacearch being done on this rare but fatal problem, and the odds are, lexie will die before the age of 23 if we dont find a cure. i have looked the internet over for 9 years and cannot find any new infrmation, drs studies, or and research on this illness. i dont want to loose our beutiful lexi or any other wonderful children to this anymore. please, if you know any info or have a child with ebsteins, your not alone. http://www.facebook.com/lexiscure leave us a comment here or there. we would love to hear from more people out there so we all know we are not alone.