Help with Tobias liver transplant medications, other costs

Eight-year-old Tobias started getting ill in September 2024 at home in Wichita, KS. Kansas City Children's Mercy Hospital original diagnosis was leukemia.  Back at home Tobias' condition worsened and he complained about his stomach hurting and his skin turned a greenish yellow. Tobias was rushed to Kansas City and admitted with acute liver failure. Doctors then determined he had an extremely rare disease affecting the organ's enzymes. He kept asking them if he was going to die.

Critical and put on the liver transplant list Tobias was placed in a medically induced coma, his health worsening. Thank God a liver became available with no more than a week to spare. Following the transplant Tobias had to relearn how to speak and reuse his fine motor skills due to the effects of the disease on the rest of his body, medications used to keep him in a coma, anesthesia used during the transplant, and pain medications afterwards. 

Tobias's family lived at the Ronald McDonald House throughout the ordeal. Amy tirelessly worked with nurses, physical and occupational therapists to help Tobias, who being only eight, often became angry from frustration.

There were further complications when Tobias needed treatment to take care of paralysis to his vocal chords from acids found in vomit coming up around the feeding tube down his throat while he was in the coma and for a short time following the transplant.

In December Tobias joined his mom, dad, and stepfather at the Ronald McDonald House with my niece taking him across the street to Children's Mercy Hosptial daily for lab work, pt and ot, and to see the doctors. While food is provided for all families at the Ronald McDonald house, they had to purchase Tobias food separately because of the special diet he will be on the rest of his life.

Tobias wears a hat because of bald spots from the sticky EEG pads, and the mask he will always have to wear in public, but with the resiliency of youth, he took us on the grand tour including his favorite place, the game room and the wall of hearts.

They were cleared to go home in early January, 2025 but having to spend all of her time at Children's Mercy Hospital, Amy and Travis lost their jobs and with staff layoffs and cuts, it could take well over a year or longer for Tobias to get Supplemental Security Insurance to help begin paying on over half a million dollars in medical bills that insurance didn't cover and his life sustaining anti-rejection and other medications because of nutrients lacking in foods he cannot eat. Travis couldn't work during that time period either because my niece doesn't drive.

Amy still can't work as Tobias will have to return to Children's Mercy bi-monthly for up to a year or more for labs and other exams. Due to his age Amy has to be with Tobias at all times. His stepfather can't go in her stead because he is not Tobias "legal father" and Tobias birth father lives in another state. 

Donations are needed for gasoline to make the trip to and from Children's Mercy Hospital, which is five hours one way, every couple of months or as needed. They are struggling to pay for phones and the internet, which are critical in case they have to call Children's Mercy if Tobias should have any medical issues related to the transplant. Tobias's medications are very expensive and not covered by Medicaid. The family is still paying on past due utility bills and back rent. The landlord didn't evict them for nonpayment of rent, but they are paying it back in small increments now.

Tobias has a long way to go yet both physically and emotionally as there are so many activities he will never be able to do again along with always wearing a mask to minimize getting an infection.