Community Supports Boy with Biliary Atresia

If your life goes awry, do you trust your community to stand by you? Luckily, for 6th grader Ethan Chandler, his Carterville, Illinois community jumped in to help when he began experiencing some medical issues. According to WSILTV, Ethan was born with biliary atresia, a rare liver and bile duct disease. There are numerous treatments for biliary atresia, including the Kasai procedure (a surgery which removes obstructions) and a liver transplant. An estimated 50% of all children with this condition require a liver transplant before 2 years old, rising to an estimated 70-80% by age 20. 

Ethan received his liver transplant in 2011. Now, at age 11, he is experiencing a number of complications and adverse reactions due to this transplant. On his GoFundMe page, which is raising money for treatment costs as Ethan transitions to care at St. Louis Children’s Hospital, his mother Holly explains that Ethan has been experiencing uncontrolled bleeding and portal hypertension.

Recently, his town helped fundraise to assist with Ethan’s care. The community donated food for the barbecue event, as well as items for a silent auction. Altogether, they are doing all that they can to ensure that Ethan and his family receive the help that they need.

If you’d like to donate to Ethan, you may do so here

What is Biliary Atresia?

As described above, biliary atresia is a rare liver and bile duct disease. Doctors are not sure exactly what causes this condition, though some research suggests that the bile ducts become damaged in the womb or shortly following birth. Infants with biliary atresia experience the blockage, destruction, or scarring of the bile ducts. Normally, these tubes help carry bile from the liver to the gallbladder. However, when these bile ducts are scarred or damaged, it prevents the flow of bile. As bile accumulates, it causes a number of health issues. Biliary atresia affects both female and male infants, though it tends to affect slightly more females. Symptoms, which typically appear within 2-3 weeks following birth, include:

  • Jaundice (yellowing of the skin, eyes, and mucous membranes)
  • Dark urine and light (pale yellow, gray, white) stools 
  • Pruritus (intense itching)
  • Distended stomach
  • Irritability and poor weight gain
  • High blood pressure
  • Abnormally enlarged liver
  • Cirrhosis (scarring)
  • Heart and kidney malformations
  • An absent spleen OR more than one spleen
  • Liver failure

Learn more about biliary atresia.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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