Progressive Familial Intrahepatic Cholestasis (PFIC)
Kennedie was born September 8, 2017 with her twin brother. She wasn’t growing like her twin brother despite eating more than him.
In March 2018, she was breathing funny, not acting herself, and throwing up more than usual. Kennedie was referred to the GI clinic at Children’s Hospital Colorado. They scheduled her for an upper GI series. However, before that appointment could happen, she was hospitalized for a spontaneous brain bleed.
On May 15, 2018 we received the call from Kennedie’s liver specialist at Children’s Hospital Colorado with her official diagnosis. Kennedie has a very rare disease called Progressive Familial Intrahepatic Cholestasis (PFIC) type 2. Her liver doesn’t produce the protein that exports bile out of the liver to break down fat and absorb fat soluble vitamins. The build up of bile causes scarring in her liver, extreme itching, and with her particular type, she is more likely to develop cancer within her liver.
She continued to fail to thrive and depended on feeding tubes, TPN support, GJ tube placement, and a regimen of vitamins and medications to help control her itching.
Around her first birthday, her team requested transplant benefits from insurance. After a long battle with insurance, she was listed in February 2019. Kennedie’s uncle wanted to be her donor but was ultimately unable to do so. A family member created a Facebook post and setup a new email account for people to send their information to.
We found a living donor for Kennedie and on April 4, 2019.
April 26, 2019 Kennedie received her gift and, despite several setbacks, has begun thriving! Kennedie’s donor remains a part of our family to this day.
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