Peyton was born on 8/7/2021 by c-section and taken to the NICU due to difficulty breathing on his own. He spent his first two nights there and on Monday morning we were told that he had pulmonary hypertension and would need to be sent to another hospital that was better equipped to handle his condition. We were told he was very fragile and any stimulation could be harmful, so we were not able to hold him or talk to him. He was going to be flown to Cincinnati Children’s Hospital and we were told that no one could fly with him and the doctors warned “he may not survive the flight.” Terrified, we drove the 3 hours to the hospital and arrived to find out that he did indeed survive the trip. After many tests he was found to have a rare genetic disorder called Zellweger Spectrum Disorder, this disorder can effect many organ systems including the liver, kidneys, hearing, and vision.

He spent 3 months in the NICU at Cincinnati Children’s hospital with many tests and procedures. During this time he had little interest in eating and his formula had to be changed several times to find one he could tolerate, then he developed a gastric infection and he had to get nutrients through an IV for 10 days, next came the tube from his nose to his stomach to deliver formula. Before he could be discharged home he had to have a PEG tube placed and we had to learn how to feed him and give medications through it. He was on one medication to help his liver function but we were told he would eventually need a liver transplant. On 11/4/2021 we were finally able to take our little man home. He had to have frequent visits back to Cincinnati for appointments and he learned to love car rides.

As he has gotten older he has faced new challenges but has always been the sweetest, happiest baby you could imagine. He has hearing loss and wears hearing aids, needs braces for his ankles to assist with standing/walking, and still depends on his PEG tube for nutrition and medication. He participates in physical, occupational, and speech therapy every week and we are truly amazed at how much our little man learns and overcomes on a daily basis.

Just after his 3rd birthday we were told that the medication that was supposed to help his liver was not working as well as they had hoped and we would need to start the process of getting him on the list for a transplant. We spent a week in Cincinnati as he went through testing and appointments for the transplant evaluation. After a few weeks we were told he had been approved for transplant and was ready to be added to the transplant list. As scared as we all are we know that our strong little man will overcome this obstacle as well. Thanks so much for reading about Peyton’s story.

We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Peyton’s fight.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to families, and gifts to COTA are tax deductible to the fullest extent of the law.