Support Aleah's Journey to Health and Hope

Hi I'm Aleah,

I'm a Transplant Warrior. This all started when I was born. I had a condition called Gastroschisis (Gastro-ski-sis), fancy name for the intestines being on the outside of the body instead of inside. I was rushed off into surgery a few hours after I was born. My small intestines were to damaged to save. This meant I couldn't eat as an infant. The doctors started me on TPN (transperitoneal nutrition) which is IV fluid with nutrition in it. Great stuff for short term use but not for long term use. TPN lead me to have organ failure of my liver and pancreas. If you don't use them, you lose them. I was placed on the transplant list at a year old. I was transplanted a few months later on Thanksgiving Day 2013. Talk about giving a whole new meaning to Thanksgiving!

I'm 14 now and my Multiviseral transplanted organs of Small intestines, liver and pancreas are doing great. So, why am I here again? My native Large intestine and Colon are not doing great. My Colon is enlarged and both my Colon and Large intestine are not moving well. This allows for my normal gut flora to over grow and leak into my abdomen and blood stream. This is very dangerous. I've have had this issue for 2 years now. I've maintained my gut flora with antibiotics. Now the medications aren't working anymore and my insurance doesn't want to pay for the really really expensive ones. The doctors don't really know what causing it, Genetics, may be it's the immunosuppressant drugs? Multiviseral transplants are still fairly new. There's only about 100 done each year WORLD WIDE. Only 5 surgeons at 5 different hospitals in the United States that can do the surgery. I'm on my way to met one of these surgeons at Miami-Jackson Transplant Institute to see if they can help. I got my mom as my chauffeur and my biggest cheerleader and advocate, but it's a long trip from NE Georgia. I'd really like some snacks, tunes, maybe not have to share a bed with my mom at the hotel and let's not forget mom's gas. So, If your willing to help a girl out, we'd greatly appreciate it!

Update: we are home with another trip for a direct admit being planned in mid July. Dr. Garcia doesn't see a transplant needed in the near future but this could change depending on what the test say in mid July. Dr. Garcia wants to scope Aleah herself and see what is going on. This whole plan can change if Aleah beomes ill between now and mid July. If that happens they want her to be transferred from CHOA to Miami for direct admit during the illness. We are awaiting dates and times from Miami along with approval for a new medication.