My name is Acacia Puleo. I was born with a rare intestinal disorder called intestinal malrotation. This means that when my organs were forming before I was born, they kinked at the top and all the tissue below died. I was rushed into emergency surgery immediately following my birth and 98% of my intestines were removed.
My family was told I had about a week to live. I was given lots of different therapies, medicines and treatments and had a lot of traumatic experiences. I was given TPN and lipids which were helping give me crucial vitamins, minerals and fats to stay alive but it was killing my liver at the same time. After a few months I had developed end-stage liver disease. My parents were constantly told to pull the plug on me but they never gave up fighting for me. When it seemed like nothing was working my family was told that if we went to children’s hospital of Pittsburgh, I would have hope for a last chance at survival. I might be able to get a multi-visceral transplant. We waited for months for the call. My condition continually got worse. There was also a connection issue and because I was so small, I needed a pancreas too. I was closer to death every day until finally on September twelve 2003, I received a small bowel, liver and pancreas transplant!
After a few months, I was able to tolerate solid food and reduce a lot of my meds. Although a few years after my transplant when I was three, I had a battle with biliary atresia which caused me to need a liver line (PTC) for three months. I eventually was removed from all medical devices until I had my second battle with biliary atresia when I was 9. I had another liver line (PTC) for six months.
I am now fourteen years old, I am a freshman in high school and recently returned from a brief hospital stay but I am doing great. I love to ski, zip line, ride ATV’s, swim hang out with my friends and so much more! Although I wouldn’t be alive if it weren’t for the organ donor who saved my life and gave me the gift of my angel parts.
– Acacia Puleo