Rare Disease Day 2022: Meet the Kostecki Family

You’re on Your First Family Vacation and Suddenly Your Child Falls Ill

You’re in a foreign country, thousands of miles away from home and your thoughts begin to race – was it something she ate, a common cold or something worse? That’s exactly what happened when Fred and Kristin Kostecki took their three-year-old daughter, Abby, to Mexico. There, Abby began presenting signs of fever, lethargy, vomiting and diarrhea – common side effects for numerous ailments.  

Unfortunately, Abby Didn’t Get Any Better 

After returning home and enduring dozens of tests, Abby’s medical team only found an enlarged spleen and abnormal blood work. Ultimately, doctors diagnosed Abby with leukemia. Fred and Kristin couldn’t believe it – how could this be?  

They took Abby to see a liver specialist at St. Louis Children’s Hospital for a second opinion and initial diagnostics pointed to cirrhosis of the liver. It was later discovered that she had Congenital Hepatic Fibrosis (CHF), a rare liver disease caused by abnormal embryonic development of the portal veins and bile ducts. 

Fred and Kristin were relieved to learn their daughter did not have leukemia but their relief quickly faded as they realized their little girl would experience a lifetime of health complications, “Initially it was a relief but there were so many correlating issues.” 

Fast Facts on CHF 

• rarely occurs as an isolated problem 
• affects 1 in every 10,000-20,000 people 
• treatment is symptomatic and supportive – there is no cure 

Today, Abby is 25 years old and lives in Australia with boyfriend, Nick. Abby only has 20% liver function and battles with several complications like esophageal varices and kidney cysts. She has endured 4-6 upper endoscopies a year throughout her childhood and continues to have procedures on a less frequent basis. 

The Kostecki family has relied on their friends, family and faith to stay positive. Kristin stated, “I had to remind myself there was always someone sicker than Abby in the hospital. Every day she doesn’t need a transplant is a good day.” 

Paying it Forward with ALF

This April, Fred and Kristin plan to run the 126th Boston Marathon® with Team ALF to help raise funds to fight liver disease. The couple said, “Both of our daughters went to school in Boston – it’s like a second home to us. Being a part of team ALF has made us realize we’ve been on more of a journey than we realized. It’s given us the opportunity to reflect on everything we’ve been through and be thankful we’ve been able to provide Abby with a relatively normal life.” 

Thank you, Fred and Kristin, for your support and dedication to the American Liver Foundation and helping all those affected by liver disease. We cannot wait to cheer you on at the Marathon in April!