4-year-old with rare genetic disease gets new liver thanks to ‘complete stranger’ from Facebook

A 4-year-old girl is alive thanks to a “complete stranger” her family found on Facebook.

While social media isn’t typically known for being the friendliest of places, there are still corners of the internet where you can find people who are willing to help others.

In 2018, the Knakmuhs family found one of those people. The woman, Katelyn Roth, donated a portion of her liver so the family’s youngest daughter could have a chance at a better life.


Jeremy and Emily Knakmuhs welcomed their twins Kennedie and Remi in 2018. Both seemed to be healthy at birth, but it quickly became apparent that Kennedie wasn’t growing like her brother Remi.

“She was not rolling over, she wasn’t strong enough to hold her head up,” Emily told CBS4 in 2018.

A pediatrician initially diagnosed her with acid reflux. But when she was just eight months old she was hospitalized and diagnosed with PFIC, a rare genetic disease that causes liver failure.

“It’s where the liver can’t excrete bile normally and so kids get severe itching, like they’ll wake up with their bedsheets covered in blood because they’re always itching,” Dr. Megan Adams, a transplant surgeon at Children’s Hospital Colorado, said.


Not only was Kennedie jaundice and underweight, but she suffered from a terrible itch.

“She would scratch inside her ears, all over her face, her belly, it was just constant,” her mother Emily said.

And because she wasn’t dying, she didn’t qualify for a transplant from a deceased donor. She needed a liver from a live donor.

Rather than wait for their baby girl to get sick enough to qualify for a deceased organ donation, they took it upon themselves to search for a live donor.

Emily put out a plea on Facebook, and the family received “responses from all over the country.” However, there was one that stuck out to them.

Katelyn Roth, a stranger to the Knakmuhs family, offered to donate a piece of her liver to Kennedie.

“She said that she thought that the reason that she and her husband hadn’t had children yet is because she was meant to help Kennedie first,” Emily recalled.


In April 2019 both Kennedie and Katelyn underwent surgery, and it was a success!

While Kennedie initially had some setbacks after the transplant, she is now four years old, and her quality of life has drastically improved all thanks to a stranger from the internet.

“It doesn’t have to be a loss of life to donate. You can be a living donor and you can save a life that way too. And it’s a wonderful thing,” Jeremy said.

“I hope people can see that this short amount of time of discomfort that you may and will experience being a donor leads to a whole new life for somebody like Kennedie,” Emily said.

If you would like to become a living donor, you can find more information here.

Please share this important story and encourage others to become a living donor. You can help save lives!