Medical Expenses for Liver Transplant

We also have a cash app set up for her $Niy618. My daughter was diagnosed with a rare liver condition called Biliary Atresia a few weeks after birth. After countless trips to OSF Children’s Hospital of Peoria for final diagnosis, she was able to get a surgery that could prolong the expectancy of liver failure so soon. Following surgery we expected a good outcome. Her liver biopsy came back & confirmed she is in stage 3 fibrosis & has advanced scarring of the liver and after iv antibiotics to rule out infection the Drs confirmed that surgery was a fail 10/24/23 and her liver was just getting worse. Most babies with her level of liver scarring will not live past 2 years old without transplant. She’s now 9 month old. Since then her health has greatly declined. She’s sitting at 23 on transplant list originally from a 9 (Higher number=worsening condition) We have been to Peoria and back (1hr 20min from home) week after week. Due to her biopsy results we now have to travel to Luries in Chicago IL to a pediatric transplant specialist which is 3 hours away from home and have been doing this monthly since Oct. 2023. She’s had multiple hospital admissions usually 7+ days at a time. I’m asking for assistance so that we can afford to continue to get her to the Dr in Peoria for her follow ups, as well as back and forth to Chicago while we await for transplant. Expenses for travel, medication, bills, gas, food, overnight stays in different cities etc are completely overwhelming especially having went completely through savings. Unfortunately I will continue to have attendance issues due to her many appointments/hospital stays if I get hired anywhere right now but I am still trying, so ANY help is greatly appreciated. Update- I will be getting evaluated to give her a piece of my liver which will cost me to be out of work for a while but I feel her health is priority if we can go this route instead of waiting for deceased doner.

UPDATE- She has had a feeding tube placed due to not gaining weight for 3 months straight just discharged from hospital after 9 days. Her medical team has written letters to transplant team to get her more points for surgery ASAP. Please keep her in your thoughts and prayers.

UPDATE 03/31/23- She woke up with black stools and vomiting blood and lots of clots. We are back in hospital for at least another week to stop the bleeding/ find source. She’s lost 2 of the pounds she’s gained on the feeding tube. They raised her score to 28 last admission and now are writing for more points again due to the varices (possible portal hypertension).

UPDATE- Transplant is Tuesday April 30th! I will be donating some of my liver to her