Theodore Yoko-Markley

Teddy could use your help with his liver transplant!

Teddy has been doing a great job fighting Biliary Atresia since his birth in February. Unfortunately, he won’t be able to keep the liver he was born with to stay healthy and was listed for a liver transplant in August. He’s thankfully and gratefully holding steady at home while we wait for his liver match to become available, but we know things can change at any moment or we can be called at any time for his transplant and we could use some help with paying for the expenses that come with needing a transplant.

Through everything thus far, Teddy has mostly been happy and cheery (except when he’s hungry – then he will let us KNOW, but ONLY a bottle). He lights up like a Christmas tree when his sister comes into view – she is clearly his favorite person in the world. He has the most adorable giggle and beautiful blue eyes that we are so excited to see without yellow-tinted sclera. Teddy is currently very jaundiced and is experiencing portal hypertension. He’s deficient in vitamins, D, E, K, and A, which he takes supplements for daily or twice daily, as well as taking other medications to prevent cholangitis and to try to promote any bile flow that can occur. He also sometimes needs vitamin K injections to keep it from getting too low, needs regular blood draws to keep his PELD (pediatric end-stage liver disease) score accurate, is at risk for easy bone breaks due to his vitamin D deficiency, and his weight gain has slowed way down even though he’s on a 30 calorie/oz special formula for babies with fat malabsorption problems. He also refuses to eat solids right now; we think it’s probably the texture and taste, though his formula smells like it tastes awful, so not sure how that’s the preferred food but here we are.

While insurance does cover many aspects of his medical care, it doesn’t cover certain medications, his formula (which, before the formula shortage, cost $180 for six 1lb cans, but now costs upwards of $300 for six 1lb cans, and we go through approximately 1 can every 2 days due to his current calorie needs and altered recipe to meet this calorie intake goal), or the time off we’ll have to take for surgery and recovery once his liver match is available. We will have to take several weeks off from our jobs and relocate to Charlottesville during this time. Unfortunately, the majority of both our PTO was used for Teddy’s birth, Teddy’s procedures and Kasai, and other continued appointments for him, his sister, and us as well as any other unforeseen events that have occurred. We’re hoping to build a fund dedicated solely to Teddy’s transplant costs, both immediate and future, as he will require lifelong medication to keep his body from rejecting his new liver.

Donations to Help Hope Live can help ease this financial and consequent emotional burden during Teddy’s surgery and recovery so we can focus on him getting better and having the best life possible.

Also, thank you to Sarah Wood Photography for Teddy’s campaign photograph!