In my last update I mentioned a little boy named Antonio. Well I'm heartbroken to tell you , that yesterday very early in the morning, on May 7th, he passed away. Sweet little Antonio had just turned three last week, and in his three years he went through more medical procedures, and more pain and discomfort than many people experience in a lifetime. There are so many things that Antonio will never experience, it's not fair, and it's heartbreaking that after struggling so hard, we're left with such a sad ending.

I met Antonio's mom Sheri almost a year and a half ago. She posted to the online community I am a part of, just before we were having one of our local support groups. I sent her a message and she ended up taking a cab there from the hospital. Since it was just Sheri, myself and Stacee our coordinator we had plenty of time to talk and get to know each other. Antonio was born with the same disease as Havalah, biliary atresia but his disease path was different. Antonio was lucky to have a working kasai - but unlucky in that he was having almost all of the complications that kids with working kasai's often get. He had ascites, varices, and repeated cholangitus. He had a g- tube in his side because like many of our liver kids he had a hard time gaining weight. This bout of cholangitus was a rough one and soon after they made the decision to list him for liver transplant.

Antonio had a lot of struggles while he waited and waited and waited for a liver. Again he was the opposite of Havalah. Havalah had high lab numbers but not many complications and overall did not seem very sick aside from her size and color. Antonio's color was often fine, and his labs were often fine, but he had a lot of struggles and he was often inpatient at the hospital for various reasons. Because his labs didn't accurately reflect how sick he really was, his PELD wasn't as high and he waited longer. They had to appeal for extra points in order to get a PELD high enough to get him a liver in time. I remmeber how rough of a wait it was for his mom and family. They watched theirr little boy struggle and worried it wouldn't come in time. I remmeber when they had a false alarm and how devestated his mother was.

I also remmeber when we were at the hospital in Novemeber - just for the day for Havalah's cidofavir treatment. I was surprised and excited to find out that Antonio was at the hospital - that they had gotten the call and that he would be getting his transplant that very day. His family was nervous and scared but so excited and happy.

I wish transplant would have turned things around for Antonio - but he continued to have various infections and complications and continued to be in and out of the hospital. This spring he began to have respiratory issues and after a lung biopsy he ended up in the PICU. Things would look better and than worse and than better again for Antonio and his family spent many weeks there ... struggling and praying, and our community prayed along with them. This past Tuesday in the very early hours of the morning the worset case scenario happened and he passed away.

I haven't talked to Sheri - but I am sure she is heartbroken and devestated. Along with her husband , three other children, their extended family and friends, our liver families community and a whole lot of staff at the hospital. So many people hoped and prayed that Antonio would turn it around and that the long hard struggle would eventually just be a bad memory.

Every time I think of our upcoming trip to Disneyworld I can't help but think how badly I wish that Antonio and his family were doing the same thing this summer. Please keep everyone that loved Antonio in your prayers, but especially his family, and especially his mom Sheri.