If you've found us, welcome to the party...

Our daughter, Syenna, was diagnosed with Chylous Ascites at 4 months of age in August of 1997. Her battle with this rare and little known disease has changed our family. She underwent over 20 surgeries since 5 months old and numerous tappings to relieve a liter each time of chylous fluid from her belly. At varying stages, her belly measured from 48cm to 64cm. We tried everything from shunts to Portagen to bouncing on a trampoline to help her, there's nothing I haven't heard of! :)

It's now been over three years since her recovery, it's our hope that this website will provide some information to parents regarding their child's medical options and care. I'd like to thank Doernbecher Children's Hospital in Portland, Oregon for their love and support over the years. We literally couldn't have done it without you~

Stacey & Syenna

at diagnosis

her last home nursing visit