ANNAWAN — Like many other girls, 5-year-old Katelyn DeRycke loves to play outside, to swing on her swingset, to go fishing and swim. She loves playing with her Barbie dolls and with her 8-year-old sister Kyla and the family puppy. She likes playing with the IPAD.
But unlike most other little girls, Katelyn has some special medical challenges. As a newborn, Katelyn was diagnosed with Autosomal Recessive Polycystic Kidney Disease, a disease which claimed the life of her brother Noah in September 2003 when Noah was just 5 hours old.
Autosomal Recessive Polycystic Kidney Disease (ARPKD) is a genetic disease, in which both parents are the carrier of the ARPKD gene. However, only 25 percent of children born to parents who are carriers will have the disease. For Adam and Hope DeRycke, they knew at 25 weeks into their pregnancy that their baby daughter had the disease.
On Tuesday, Hope DeRycke talked about her daughter’s journey and challenges, and the goals she has set for her daughter.
From the very start, her daughter has been a fighter, DeRycke said. When Katelyn was born, the doctors gave her a 20 percent chance of survival and asked the parents if they wanted to pursue treatment for her. But when DeRycke reached out to touch her baby, Katelyn grabbed her mother’s hand and squeezed her fingers.
“I knew that was a sign that she was a fighter and that also was the sign that made our decision for us,” DeRycke said. “We knew it would be an uphill battle, and it definitely has been, but it’s a battle we were going to take.”
Two days after Katelyn was born, she had her first kidney removed, with the second kidney removed just days later. Katelyn spent her first 45 days in OSF St. Francis Medical Center in Peoria and was put on peritoneal dialysis, which her parents were trained to handle at home.
At 2 months, Katelyn began having seizures and had a stroke, DeRycke said. Her vision has been damaged, but the extent of that damage is undetermined as of yet. When she was 13 months old, Katelyn underwent a kidney transplant, receiving a 40-year-old kidney from her aunt.
Fortunately, her daughter’s kidney transplant went well and Katelyn went nine months without having any hospital stays, which is the longest she’d ever gone without being hospitalized, DeRycke said.
But since that good stretch, Katelyn has been hospitalized more than 20 times due to infections, DeRycke said. Doctors have determined the bile ducts leading from Katelyn’s liver are becoming more and more deformed causing the bile to back up and stay in the liver, causing infections.
Since April, Katelyn has been on a new medicine which has helped with her reoccurring infections, DeRycke said. The doctors say her daughter is now strong enough for a liver transplant and now is the time to do it. The new medicine is just a band aid until a liver is found for Katelyn, her mother said.
Actually, Katelyn doesn’t need an entire new liver, but just one of the two lobes that comprise the liver, DeRycke said. The remaining lobe will regenerate itself for the donor and new lobe grow for Katelyn. Ideally, the surgery can be scheduled while Katelyn is healthy and not be an emergency situation, her mother said.
More information on liver donation is available through Froedtert Hospital in Milwaukee, Wis., by calling 1-414-955-6952, the direct line for transplant information. A donor for Katelyn must be 55 years or younger and have type O type blood.
The DeRyckes have also set up a Facebook page, Katelyn’s ARPKD Journey, to keep everyone current on how Katelyn is doing.
For now, the family is taking it one day at a time, DeRycke said.
“I’d love to plan a big vacation right now, but we need to stay nearby if we get that call that Katelyn has a donor, “ DeRycke said. “We need to be here to get that chance for Katelyn to live a normal life.”
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