RILYNN ROSE PAYNE
Rilynn Rose Payne was born January 9, 2017. She was diagnosed with Recessive Polycystic Kidney Disease (ARPKD) while our daughter, Emily, was pregnant with her. The news was very grim and disappointing every time she went to the doctor. There were many ultrasounds throughout the pregnancy, and at every appointment we hoped and prayed that a miracle had happened and that the ultrasound would show a miracle, but it did not happen that way. But as we walked through the darkest moments of this journey we saw many, many miracles of God's healing power and He directed every step of this journey
ARPKD is a rare genetic disease that causes cysts to grow on the kidneys, and in Rilynn's case, caused them to triple in size. Rilynn had almost no function in her kidneys during pregnancy leading to no amniotic fluid. Amniotic fluid is crucial to the development of the lungs leaving Rilynn with not only undeveloped lungs, but a lack of space for them to expand due to her enlarged kidneys. At just 4 days old, Rilynn went to the operating room for the first time to remove both kidneys. After two terrifying attempts they were successfully removed, a catheter was placed to begin dialysis. and her lungs began to strengthen. She spent 95 days at the University of Michigan where we had many struggles along the way. Four different times we were told she would not survive, but God had her in the palm of His hand and carved the way for her to be home today.
For myself, (Heidi, Rilynn Rose's grandma and Emily's mom) being in the healing ministry this journey has rocked my world, changed some theology and mindsets, but most of all has solidified who my God is and how important it is to have a strong foundation, know what the Word of God says, and to have your prayer warriors encamped around you. Some battles in healing you have to fight, and fight hard! We were up many nights around the clock with friends and family fighting for little Rilynn's life. The doctors were amazed at her progress and continue to be amazed!
She is currently on dialysis 12 hours a day, 10 different medications and several doctors' appointments until she reaches the weight goals to start the process of finding a donor for a kidney transplant. We strive to enlighten others about children who fight to live this life with end stage kidney disease and bring awareness to the gift of organ donation.
August 10, 2018: Rilynn was diagnosed with cancer in the liver. We are very heartbroken, but will continue to fight! We now need a liver from a deceased child. The kidney transplant will be put on hold.
June 13th, 2019: 10 months later Rilynn received her new liver that has saved her life. No words to express our gratitude to a family who lost their 4 year old child. After she has healed up, we will move forward with the kidney transplant. Doctors are looking at November of this year.