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Our Story

On October 11, 2011 at the age of 10 months, Addilyn was diagnosed with PFIC-2 (Progressive Familial Intrahepatic Cholestasis Type-2), a rare genetic liver disease which causes liver failure. There is no cure for this terminal disease. 

It's been a long steady road but here we are. We have experienced 6 wonderful years of stability as far as Addi's disease is concerned. However, her liver has now decided it cannot hold on any longer. Addilyn has severe cirrhosis or liver scarring, which results in poor liver function. During the past year her blood work has had several spikes and dives. She was seen last month during an emergency visit because we were concerned about increased jaundice. Her jaundice has gotten increasingly worse since. A few of her other tests have gotten worse as well.

The transplant team at Denver Children's Hospital has begin the process toward transplant. The only way symptoms of this disease can be reversed is with liver transplantation. She will need a...

Featured Post

Update on Addilyn

Good morning friends and family! I just want to give a quick update on Addilyn. A few weeks ago she had an MRI to look at some suspicious spots in her liver. The doctors ended up finding cancer. She has been diagnosed with hepatocellular carcinoma. With her poor liver health and now this cancer diag...

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Updates

 

Update on Addilyn

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Liver Transplant Evaluation

Despite 3 shots, 2 blood draws, an echocardiogram, an EKG, chest x-ray, 2 CT scans with IV contrast and countless interviews and meetings, Addi has remained joyful as can be and her playful self! She is so amazing and so incredibly brave. She is Continue Reading »

Family hike in the Rocky Mountain National Park

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Family time in the Rocky Mountain National Park!

We are trying to spend as much time together as a family before Addi's transplant. There is really no better place than Rocky Mountain National Park. Addi is such a trooper and even hiked 5 miles yesterday!  Continue Reading »

It's time!

It's been a long steady road but here we are. We have experienced 6 wonderful years of stability as far as Addi's disease is concerned. However, her liver has now decided it cannot hold on any longer. During the past year her blood work has had Continue Reading »