The Linn family in Chapel Hill is celebrating good news -- a living donor match has been located for their 5-year-old daughter, Hollis, who is battling a rare liver condition without a common medical name.
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Family seeks donor for daughter with rare liver condition
Grace Hayba, WRAL health reporter
The Linn family in Chapel Hill is celebrating good news -- a living donor match has been located for their 5-year-old daughter, Hollis, who is battling a rare liver condition without a common medical name.
On Saturday, motherLindsey Linn posted the good news on her daughter's Support Now page, writing:
"Yesterday was a big day. Hollis’s nurse ... shared the news that we have a living donor match and the surgery will be scheduled on April 28th."
She went on to write, "Our girl will have a new liver in 9 days! It doesn’t feel real. Still trying to process everything and mentally prepare for what is ahead. We’ve known this day has been coming for such a long time but doesn’t make it any easier. Now is the time to trust God and the incredible surgeons at Duke."
The update comes days after WRAL News featured a story about 5-year-old Hollis Linn of Chapel Hill, who isbattling a liver condition that is so rare it doesn’t have a commonly usedmedical name.
“We never got a name for what she actually has,” mother Lindsey Linn explained. “It’s just the way her bile ducts are in her liver; she doesn’t haveenough of them.”
Lindsey Linn told WRAL that Hollis’ condition has caused her to develop an enlarged spleen. As a result, the family is extremely careful with what kindof physical activity Hollis is allowed to do out of fear of a rupture.
“Taking her to elementary school this past year and talkingto the P.E. teacher that she couldn’t participate, that hit me the hardest,” said father Jeff Linn.
The Linns did rounds of genetic testing before andafter Hollis was born, but no identifiable cause was found.
The first indication of a problem came when Hollis was bornwith jaundice.
“When she was six weeks old, she was still pretty yellow, andthat’s past the time where it’s considered normal,” Lindsey Linn said. “I remembergetting the call that something was going on and just falling to my knees.”
The parents share it has been five years “of watching andwaiting” as her condition slowly progressed.
Hollis was put on a waitlist for a liver donor.
“With the stage of her liver disease, her belly is bigger.It can make it harder for her to run as fast as the other kids,” Lindsey Linn said. “Inher class, it’s hard to sit cross-legged so she would sit on a little chairbecause that would make it more comfortable.”
Jeff Linn added, “Breathing is difficult. Swallowing and eatingis a challenge sometimes.”
The parents were told it was unlikely another child wouldhave the same condition, but that’s exactly what happened when their youngest,Hazel, was born six months ago.
Lindsey Linn says parenting two children with the same rare condition is “terrifying, isolating, so many different things. It’s hardto believe."
Hazel’s condition isn’t as severe as her sister’s. Lindseyand Jeff Linn are hopeful their younger daughter won’t need a transplant, as they expand thesearch for a match for Hollis.
The father shared the process taught the family patience.
“The medical teams have been great and fantastic, andthey’ve gone through all the steps, but that is a long process. It has beenfive years,” he said. “Thankfully, her condition isn’t so dire that it justspiraled downwards immediately, but for us, it’s been prolonged, and youwouldn’t know looking at her.”
>> What it really means to be an organ and bone marrow donor
Living organ donation allows a donor to directly specify whothey wish to receive their organ, drastically cutting down on the time someonespends on a waitlist full of unknowns.
“It’s waiting for a call that could happen at any time,” explainedLindsey Linn. “If we had a living donor, they go through the process and we find amatch, we set a date, we can plan, we can have family here to help, so it’s notso on the spot and on the fly.”
She added, “With living donation, they are able to run a lotof tests before with the liver to make sure it really is the best possiblematch.”
A living liver donor would only donate a piece of theirliver. The organ is regenerating and will grow back to its normal size in theweeks post-surgery as the recipient’s body accepts a new, healthy organ inplace of the one that has failed.
“Hollis doesn’t know the difference. She hasn’t knownanything different. But when the transplant comes it’s going to be a worldchanger for her, and for us,” said Jeff Linn.
Lindsey Linn added, “It’s giving somebody their life back.”
For more information about being tested specifically forHollis, call 855-855-6484.
When asked what his message would be to prospective donors,Jeff Linn said, “You are improving not just her life but all of our lives.”
For answers to commonly asked questions, interested donorscan learn more about organ and bone marrow donation through .
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