10 month old born with rare kidney disease waits for transplant
A Van Buren County couple is counting their blessings this holiday season as they prepare for their daughter’s first Christmas, hopeful their little girl will soon receive a life-saving kidney transplant.
The 10-month-old Rilynn Rose Payne has no kidneys and will spend 12-hours a day hooked up to a dialysis machine until she is old and big enough to get a transplant.
“It's just indescribable how much love and how much pain you feel when she feels pain,” said Emily Payne, Rilynn’s mom.
With each dialysis treatment, Rilynn runs the risk of infection, which could be deadly.
“You think you're safe and then all of the sudden you're not,” Payne said. “She can perfectly finally one minute and then the next minute everything is about to stop.”
Rilynn had both of her kidneys removed when she was just a week old because she was born with Recessive Polycystic Kidney Disease (ARPKD).
Emily, A Paw Paw High School graduate, waited six days to hold her baby girl for the first time.
“They really pushed for us to be able to hold her that day because they knew she was going into surgery and they didn't know if she would make it through that,” Emily said.
Many times she and her husband, Zach Payne, were told their only child would not survive.
“She's just really overcome everything. We’ve had doctors even apologize to us for giving us such grim hope for her, she's just really known as a miracle child at the hospital,” said Emily.
Rilynn, a baby who doctors can only describe as a miracle, still has a huge battle to overcome; she needs a kidney transplant.
Zach said, “She's got a whole life ahead of her and she's already gone through a lot more than I ever have.”
Unable to trade places with Rilynn, Zach hopes he will be able to donate his kidney to his daughter.
Emily said, “Developmentally she’ll just really take off once she gets a kidney transplant.”
The emotional toll is indescribable, but friends, family, and even some strangers, have rallied around the Payne family to ease some of the financial burden.
“I’m very nervous for what’s to come,” Emily said.
Post-transplant treatments start around $2,000 a month.
The Payne family has partnered with the Children’s Organ Transplant Association to help fundraise for the life-saving transplant.
The couple has already sold their second car and Emily quit her job at the Secretary of State’s Office to become her daughter’s full time nurse.
Looking back at the job she left, Emily recalls watching people decide whether to check the box to become an organ donor.
“I just wish I could go back and share her story and share that we could give her such a better life if you could donate,” She said.
Rilynn is a survivor with a smile that makes it easy to forget she’s sick.
Emily said, “She’s so happy and I feel like she’s gone through much that she doesn’t take anything for granted, she’s happy just sitting on the floor playing.”
Even in the darkest moments of this family’s journey, friends and relatives work to light their path.
Rilynn’s grandmother sells candles to help fundraise and Rilynn’s Candles can be found at the Tinker Shop in Paw Paw, Urban Studio Salon and Spa in South Haven or are available for purchase online.