COTA for Team Cormack

Our Story

ARPKD/CHF is a rare disease that affects the child’s kidney and liver. It is usually diagnosed in babies and young children. 1 in 4 babies born with this disease die within the first hours of life. Small cysts form on the child’s kidneys and and liver, along with damage, eventually leading to failure and transplants of both organs. Currently there is no cure.

Our first daughter, Jaina, was born a healthy 7lbs 12 oz in July of 2010. She was a beautiful and sweet baby and we thought had no physical problems. At 2 ½ months, she began to have multiple urinary tract infections and terrible fevers. She was hospitalized several times and  had multiple tests done, but the doctors were inconclusive. She seemed to outgrow the infections, but always had multiple unexplained fevers each year. In September of 2012 we had our healthy son, and in May of 2014 our sweet daughter, Chesley. At Chesley’s 2 week check up, the doctor also performed Jaina’s preschool physical. During the physical, our pediatrician found a small lump in our oldest daughter’s abdomen. She was three. She had no signs of being sick. An ultrasound found her kidneys to be larger than an adult’s and fibrosis of her liver as well. She was then diagnosed with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis. Her blood pressure was double what a child her age should be and the left side of her heart was enlarged. In January of the following year, through genetic testing, our younger daughter was diagnosed with the disease as well. Our son is a carrier of the gene; he will not have the disease, but could pass it on to his own children. Our girls are on medication and shots daily, have yearly ultrasounds and mris, quarterly blood draws, lowered immune systems, and visit the doctor more often than normal children should. Jaina’s kidney function had currently declined to 48% (they transplant at around 15 – 20% function). She is also involved in the first ever drug trial for her disease in Milwaukee where she must be flown to the hospital there for tests and procedures 4 – 5 times during one section of the trial.

Their lives will be filled with needles, medications, and pain that no child should have to endure. Please help us to raise money for COTA in honor of Jaina and Chesley to assist with trasnplant-related expenses.