WATERFORD — Ten-month-old Westen Hagen needs a liver transplant and his family is searching for a matching donor.
Westen has Alagille syndrome, a rare genetic disorder that primarily affects his liver. His parents are encouraging people to consider organ donation.
"Westen is just joyful, playful, he's got the biggest smile," his mom Crystal Hagen said.
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Crystal Hagen calls Westen her miracle baby.
"We were trying for quite some time. We did have some infertility appointments and we had a miscarriage in between," Crystal Hagen said. She also has a daughter who is about 7 years old.
At a checkup when Westen was about 6 weeks old, his doctor noticed his jaundice hadn't gone away.
"They did bloodwork and it was kind of the same thing of, 'oh no, pack your bags and come to the hospital now. We don't know what is going on, but it is not good,'" Westen's dad Taylor Hagen said.
The family later learned Westen has Alagille syndrome.
"It's a fight I wish I could take from him," Crystal Hagen said.
"His body is just not absorbing anything that it needs to. His body is not processing the way it needs to," Crystal Hagen said. "A lot of symptoms that come with that is intense itching all the time. That’s probably the most painful thing to see is watching him not be able to feel comfortable."
Now, Westen needs a liver transplant. His family doesn't meet the requirements to be living donors, so they're searching for a donation from either a deceased or living donor.
"Just encouraging people wanting to be able to donate to check that box. It's a simple check mark, but it could save someone's life someday," Taylor Hagen said.
A living donor can donate a portion of their liver, which can regenerate after surgery.
"That is just amazing to see that someone can watch him grow part of their liver and watch him flourish in this life that he deserves to have," Crystal Hagen said.
Westen's family is hoping to find a match.
"Gosh, to get that phone call, I'm just waiting for it," Crystal Hagen said. "I don't know if I would ever be able to thank someone the way I would want to thank them for that liver."
Information about Westen's donor requirements is available on the family's Facebook page and a donor evaluation form can be filled out online.
Extended family members are organizing a fundraiser for Westen starting at 1 p.m. on Nov. 14 at Knights of Columbus in South Milwaukee. The fundraiser will include a silent auction, meat raffles, a BBQ food truck, activities for kids and more. Westen's dad says the money will go into his COTA fund, which is used for transplant-related expenses.
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