We are beyond excited! Rilynn received her new liver on June 13, 2019 after 15 rounds of chemo. There are no words to describe our greatfulness to a family that lost their child, but still gave in the midst of their pain so Rilynn could live.

You can follow Rilynn's story at rilynn's ARPKD journey on FB

A New Liver for Rilynn

Rilynn's donor announcement
From Emily:

What can you say to the person who gives your child the greatest gift.. The gift that changes their world, the gift of life?  With tears falling down my face I am so happy to announce that we have found that selfless person to become a living donor for Rilynn. Because of her we will be able to watch Rilynn surpass milestones because she feels so much better having an actual kidney. We will be able to stay out late and not have to rush home to hook her up to dialysis. Getting a kidney will filter the toxins so much better than dialysis and she will gain an appetite to want to eat like a normal child. She will be able to splash in the bath tub and be free from the pain of multiple shots a week. It’s so hard for people to understand just how much not having kidneys affects Rilynn because she handles it like a rockstar! But I know things are going to get even better from here all because of one amazing mama, Apiffany 💙

Transplant will be scheduled for the end of summer 💞

Thank you to all who have gone through the testing, shared to get the word out, donated financially, prayed for us, and encouraged us throughout this journey. And thank you Life's Special Moments Photography for capturing our journey from the beginning, Jenny is not only an amazing photographer but has a heart of gold. #rilynnstrong #endpkd #donatelife

Rilynn  Apiffany

From Apiffany:

Since my journey has started I have tried and tried to come up with the perfect way to announce this, but all my brain comes up with is God. This is God. He opened all of the doors and He has allowed it to come to this point. I look at Rilynn and am in complete awe. She is strong, courageous, beautiful and has handle her situation with an abundance of joy. I am feeling so blessed that I can help her do all of the things that a little girl should be able to do. God is using me to help Rilynn live an amazing life and I am so happy about that


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.

Updates on Rilynn Rose


To donate to Rilynn Rose Payne click the link below