Westen Hagen is 10 months old, and he needs a new liver. The rare genetic disorder behind his illness, Alagille syndrome, primarily attacks that organ, and his parents say they cannot be the ones to save him — neither of them meets the requirements to serve as a living donor for their own son.
The diagnosis surfaced almost by accident. According to TMJ4 News, at a routine checkup when Westen was about six weeks old, his doctor noticed that his jaundice had not gone away and ordered bloodwork. Westen's father, Taylor Hagen, said doctors then told the family to get to the hospital immediately — they did not yet know what was wrong, only that it was not good. Soon after, the family learned Westen has Alagille syndrome, a rare genetic disorder that primarily affects the liver.
A Body That Can't Keep Up
Crystal Hagen described her son as joyful and playful, with a big smile, even as the disease works against him daily. She said his body does not absorb or process things the way it needs to, and that Alagille syndrome causes him intense, ongoing itching. Watching Westen be unable to feel comfortable, she said, is painful.
“It's a fight I wish I could take from him,” Crystal said, according to the station's report. The couple had tried to conceive for quite some time before Westen arrived, going through infertility appointments and a miscarriage along the way; Crystal also has a daughter who is about seven years old.
Why The Hunt For A Donor Is So Narrow
Westen's family is seeking a liver donation from either a deceased or a living donor, per the same account, but his parents do not meet the requirements to donate themselves. A living donor can give a portion of their liver, which can regenerate after the surgery — a detail Crystal said she finds remarkable, since it means a donor could go on to watch Westen grow and flourish. Prospective donors can complete a liver donor evaluation form, and donor requirements are available through information the family has shared.
General guidance published by Froedtert outlines what hospitals typically look for in a living liver donor: candidates should be between 21 and 55, healthy and free from major physical or mental illness, and willing to donate without pressure from a family member, friend or anyone else, with no compensation changing hands. Froedtert's donor information also notes that a living donor's medical evaluation, surgery, follow-up tests and related appointments are covered by the recipient's insurance. It is not established whether Froedtert is involved in Westen's case specifically.
Nationally, the need for pediatric liver donors has been climbing. The Scientific Registry of Transplant Recipients reported that 758 pediatric candidates were added to the liver transplant waiting list in 2024, with 1,162 total pediatric candidates listed at some point during the year. For children with Alagille syndrome specifically, the National Institute of Diabetes and Digestive and Kidney Diseases notes that reduced bile flow and bile buildup in the liver can cause damage, and that some young children experience a severe buildup. The institute says doctors treat the disorder's symptoms and complications with medicines and, in some cases, surgery, and that getting enough nutrients is especially important for affected infants and children.
Crystal Hagen Still Waiting For The Call
Crystal said she is waiting for a call about a donor match, and the family hopes to find one soon. Taylor has encouraged anyone considering it to register as an organ donor, saying it could save someone's life, and both parents are urging people to consider organ donation more broadly.
Community Fundraiser Set For November 14
Westen's extended family is organizing a fundraiser that starts at 1 p.m. on November 14 at the Knights of Columbus in South Milwaukee. The event is planned to include a silent auction, meat raffles, a BBQ food truck and activities for kids. Taylor said the proceeds will go into Westen's COTA fund, which covers transplant-related expenses.
