Katelyn smiling in the sunshine

Katelyn’s Story

July 21st, 2016

This is a story about a little girl who has beaten the odds many times. She loves a good joke, her family, art projects and ping-pong. But Katelyn DeRycke’s story started before birth when her brother Noah was diagnosed in utero with a genetic disease. Testing confirmed it was autosomal recessive polycystic kidney disease (ARPKD) and subsequent pregnancies for the DeRyckes would have a 25% chance of the baby being born with the same disease. The DeRyckes had a second child a year later, Kyla, who was born healthy. Early in a third pregnancy in 2008, they learned that the baby was also affected by ARPKD. When her daughter was born, Hope DeRycke’s first thoughts were, “Please let her cry,” but the room was silent. Katelyn’s lungs were developed, but her kidneys were so large they prevented her lungs from working. She had a 10-20% chance of survival and her family was asked to make a choice of whether or not to pursue treatment. They chose treatment and within 48 hours one kidney was removed and a dialysis catheter was put in place. At two weeks old, Katelyn’s second kidney was removed and she was put on manual dialysis.

At two and a half months old, a stroke impacted her occipital lobe. Her family feared she would never see again, but when Katelyn woke up she looked right at her mom and smiled! At thirteen months old, Katelyn received a kidney from her aunt and recovered quickly, once again exceeding everyone’s expectations. The following nine months were free of hospital visits, but chronic fevers and infections hospitalized Katelyn at least once a month the following year. Social media played a role in Katelyn being referred to Children’s Hospital of Wisconsin (CHW) as other parents were sharing stories about the wonderful work being done for kids with kidney disease by doctors in Milwaukee. Hope began to advocate for Katelyn’s case to be transferred to CHW, and the family came to Milwaukee for treatment soon after. The team at CHW quickly ascertained that Katelyn needed a new liver and she was put on the waiting list. After two years of waiting, on July 1, 2015, Katelyn received a new liver.

Katelyn’s mom Hope shared, “The Ronald McDonald House was a life saver for our family. Katelyn thrived in the House and could focus on being a child instead of worrying about her recovery!” For 51 days they participated in many of the available House programs which helped make being three and a half hours away from home in Annawan, Illinois more bearable. Katelyn and her family are grateful for the love and support they received while they were guests in the House. Katelyn’s favorite things about staying at the House were “The trip trap bridge in the Secret Garden, the playhouse, the playroom (with the vacuum) and playing ping-pong in the game room.” We are happy to share that Katelyn continues to recover and her body is accepting her new liver. She has a big smile for everyone she meets and is always ready to tell you a good joke.

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