News Channel 8

We interviewed today with Jocelyn Maminta from News Channel 8. Jocelyn is doing a piece on Alagille Syndrome and Dylan. Dylan's GI doctor was interviewed, as well as Dave and I. Jocelyn is going to give us a day's notice before the story airs. She did tell us it would be after the holidays. Jocelyn does the 5:00 news. We hope the story will raise awareness about Alagille Syndrome, as I suspect there are more people affected by the disorder than statistics actually reveal, and that many people are misdiagnosed with other illnesses.

We did have an opportunity to talk to Dylan's GI doctor to get her opinions on the Mount Sinai tranplant team's recommendations. Unfortunately, we found out that Dylan's kidneys are functioning more poorly than we thought when we were in New York. We have now been told that it is highly probable that Dylan's kidneys would completely shut down after a liver transplant. Dylan's GI doctor does not want Dylan to have to begin dialysis, as each procedure that he undergoes has potential dangers and is taxing on his little body. All of Dylan's specialists in CT and New York are working out a treatment plan for him. We do not know yet if he will now need a kidney transplant and then a liver transplant, or if both organs will be transplanted simultaneously. We're scared, because Dylan is so complicated, and there just doesn't seem to be an easy treatment answer or treatment protocol for him. My feeling is that their recommendation will be to do a kidney transplant within six months to maintain his health, and then work on treating his liver issues with a liver transplant.

Please pray for a successful treatment plan and outcome for our little pickle.