Six-year-old Alaina (or Lanie) Hettinger enjoys listening to her older brother, Jackson, read her stories. Since birth, Lanie has suffered from several medical problems.
"Alaina was diagnosed with a really rare disease called Caroli's disease, and it affects her liver. There's a lot of scarring on her liver. With her kidneys, she has a disease called FSGS, and she gets a lot of cysts within her kidneys," said Mom, Ali Hettinger.
Lanie is on the transplant list for a new liver and kidneys. It's possible she'll get a triple transplant to include her pancreas. But if doctors go forward with just the double transplant, there's still a plan in place for Lanie's pancreas.
"They'll take the pancreas out and purify the eyelets in the pancreas and put them in the liver. Minneapolis has had success doing that, but never with a transplanted liver," said dad Luke Hettinger.
After her transplants, Lanie will spend a minimum of one month in the hospital in Minneapolis and another month as an outpatient. Parents Luke and Ali said faith and community support are getting them through this difficult time in their lives.
"Everybody has things they deal with and this is ours," said Luke Hettinger.
The Hettingers have lived in Iowa City for about a year and a half. Before that, they were head pastors at Faith Evangelical Church in Sumner for six years. Lanie was born in Sumner.
"They walked with us through every step of everything. I really feel that bonds you. They're just like family," said Ali Hettinger.
Family friend Marcy Bergman of Sumner created a facebook page called "Living Thru Lanie." She's accepting donations for the family and organizing several fundraisers coming up this June.
The Hettingers are waiting and praying. They did get a call on Christmas night, but the kidneys ended up not being a match.
For now, Lanie is living as much like a normal six-year-old as possible.
To donate to the family, contact Marcy Bergman at 319-269-3655.
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