PARKER, Colo. (CBS4) – A toddler in Parker is one in 100,000. That’s how many babies worldwide are born with a life-threatening liver disease called progressive familial intrahepatic cholestasis (PFIC).
“She’s that sweet kid that can always bring a smile to anyone’s face,” said doting dad, Jeremy Knakmuhs.
Little Kennedie Knakmuhs is just shy of her second birthday. She will share cake and candles with her twin brother, Remi, while her parents, Jeremy and Emily, celebrate her survival.
“I don’t know that we knew she was going to make it this long,” explained Emily Knakmuhs, Kennedie’s mother.
At birth, the twins seemed normal. But as time passed, Kennedie wasn’t gaining weight or growing.
“She was not rolling over, she wasn’t strong enough to hold her head up,” Emily told CBS4 Health Specialist Kathy Walsh.
At eight months, Kennedie was hospitalized. The diagnosis was PFIC, a rare genetic disease. Liver cells are less able to secrete a digestive fluid called bile. Kennedie’s liver didn’t work.
“They get a cut, you can clean it, you can put a band-aid on it, you can make it better. This, we couldn’t do anything,” said Jeremy.
Their baby girl was jaundiced and underweight. One side effect was an insatiable itch.
“She would scratch inside her ears, all over her face, her belly, it was just constant,” said Emily.
Kennedie needed a liver transplant. A plea went out on Facebook for a live donor. Stranger, Katelyn Roth, stepped up. Kennedie got a new liver in April.
“She crawled for the first time and she’s standing on her own now,” said a delighted Jeremy.
“She gets a second birthday, essentially, because of this person,” said an emotional Emily.
Kennedie has had a few setbacks since the transplant, but her parents focus on her progress. They are sharing her story to educate others.
“Rare diseases are only going to continue to be rare if nobody knows about them,” said Emily.
September 8th is Kennedie and Remi’s birthday.
It’s also the day of the Liver Life Walk in Castle Rock which brings awareness to liver disease and provides financial support for educational programs and patient services.
The Knakmuhs family will be walking with “Kennedie’s Krew.”