Levi's Story

An act of love

When Dan and Julie were first introduced to Levi’s story, all they were told was he was “a baby boy with kidney disease and clubbed feet.” After learning Children’s Mercy has one of the top 10 nephrology clinics in the country and some deep thinking and research, the Ryffs felt called to apply to adopt little Levi. A week later, they found out they had been selected to be Levi’s forever family.

Facing the unknown, but not alone

Joy at having a new baby in the house was mixed with a few nerves about the unknown before them. “Having a child with special needs isn’t something that anyone ever plans for,” Julie said. Caring for a child with special needs has many challenges and the Ryffs found they had a lot to learn. But, when they brought Levi back home to Olathe, Kan., they found an entire team of specialists across several disciplines open to understanding Levi’s unique needs and ready to fight for their little boy and help give him the best possible life.

The physical and occupational therapy teams resolved the issues in his feet, hands and elbows, which turned out to be muscle contractures due to a lack of fluid intake in-utero due to his kidneys not working properly. Eventually, he was running as fast as any other toddler and the therapist happily told the family they no longer needed her.

Specialists in the Nephrology Clinic stepped in to help address Levi’s chronic kidney disease (CKD) diagnosis. Facing an increasing oral aversion as he grew, illness caused by CKD itself and the need to put on weight so he could be placed on the kidney transplant list, Levi eventually received a G-tube. Slowly, he began to gain weight. “One of our biggest triumphs was the day that Levi finally made weight and height to be able to be active on the kidney transplant list,” Julie said.

A gift of love

By age two, Levi’s kidneys were not functioning anymore and he was started on dialysis to remove toxins from his body. He was also unable to gain weight to be eligible for transplantation and required tube feeding. At 3 p.m. on a Tuesday in early 2020, the Ryffs got the call they had been waiting on. “I was playing a game with our three kids in the basement and my husband was at work,” Julie recalled. “I went upstairs to grab something and looked at my phone. I had one missed call and a voicemail from Children's Mercy and four missed calls from my husband.” A matching kidney had become available.

“Organ donation is a beautiful thing. But it is only possible through the selfless decision of another individual and their loved ones. We still get very emotional about the gift that Levi was given,” Julie said. The Ryffs packed a bag and went to the hospital that same night to receive the transplant.

Love Will find a way

Life after transplant took on a new normal for Levi and his family. But the Ryffs were in for an even greater surprise with their son. For nearly three years, Levi had received all his nutrition via a G-tube. “The older he got, the less he would eat until finally, he quit eating orally almost completely,” Julie said. “But, after his kidney transplant, Levi suddenly decided he was ready to eat.”

About a week after Levi was released from the hospital, the Ryffs decided to get some food to go. Levi ordered mac n’ cheese with his chicken nuggets and he ate every bite. “It seems kind of silly, but it was kind of emotional for both of us. He had been strictly tube fed for so long it was almost unbelievable to sit and watch him eat so much food! Since that day, he has eaten 3 meals a day, plus snacks,” Julie said.

Today, Levi is a healthy, talkative and compassionate 4-year-old. “Our biggest surprise over the last few years is Levi himself. He is strong and resilient. It seems like every time someone says Levi won't do something or will have delays with things, he is sure to prove them wrong. He has so many of his own issues to deal with, but he is always much more concerned about the people around him. He is a wonderful example of love and kindness,” Julie said.