My name is Kristen Simms. I am a 26-year-old military wife living in Northern Virginia with two children affected by ARPKD: a four-year-old boy, Elijah and a one-year-old girl, Presley. With our firstborn son, Eli, we had no idea that he had PKD. It was found after birth and later diagnosed as ARPKD. This came as a huge shock because no one in the family had ever been diagnosed, much less heard of ARPKD. With our second born child, Presley, we were able to keep an eye out on her ultrasound and although she was delivered four weeks premature, was perfectly healthy. Both children suffer from high blood pressure but this is usually controlled with oral medications.
Having these two miracle babies has given me the strength to be the best mom I can be and be a support for other military families who go through the same thing. Our nephrologists often pass along my information to parents with newly diagnosed ARPKD babies to help support and answer questions for them.
Being a military family, our children’s father is often gone and unable to be there for procedures and appointments, leaving the bulk of it on me. Our family has become incredibly supportive and involved with learning about PKD and we are so blessed for every day we get with these angels.