Amanda Gutierrez and her children

A Mid-Michigan mother of five children was diagnosed with stage four liver disease and a rare skin disease called xanthoma.

Her condition creates painful lumps all over her body, causing her to live in constant pain.

Amanda Gutierrez said there is no cure for her rare diseases and her only chance of surviving is by finding a matching organ donor.

“These bumps and lesions are from my liver disease. My body will not process any cholesterol good or bad. So it starts to seep out of me,” Gutierrez said.

Now the 33-year-old has lesions on her feet, her hands, face, and all over her body – which she says feels like a painful, itchy sunburn.

“I can’t use my hands with these bumps because they hurt, just excruciating pain, and they’re everywhere,” Gutierrez said.

With the disease being so rare, doctors haven’t found a way to stop the itching or get rid of the bumps. They can only prescribe medications that aren’t much help.

“I am on medications to kind of slow it down, but it doesn’t work,” she said. “And they actually have not seen this. It’s very rare so they have no treatment for it.”

Doctors say if there’s any chance of Gutierrez beating this disease, she will need a liver transplant.

“The only thing that I have going for me is to find a donor. It’s my only option of treatment,” she said.

The good news is the transplant can come from a living donor. It may be Gutierrez’s only hope of being there for her five children.

“That’s the big thing that I worry about is that I won’t find a donor and I won’t be here for them,” she said.

For now, the family is enjoying every minute they have together and hoping for many more.

“I want to be here for my kids and I’ll do anything and ask anything and spread the word as much as I can to find that person who could help me,” Gutierrez said.

If you or someone you know would like to be an organ donor for Gutierrez, you can email or call 1-800-333-9013.

Copyright 2019 WNEM (Meredith Corporation). All rights reserved.

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