COTA for Aidan's Journey

Our Story

Aidan was born with a rare genetic disorder called Senior-Løken syndrome, however it went undetected until he was 15 and entering his sophomore year of high school.  While successfully maintaining a challenging school schedule and marching in the school band, Aidan’s kidneys were slowly scarring.  The damage became apparent as he fell ill in September 2021 and was taken to Baptist St. Anthony’s Hospital where his renal failure was diagnosed.  Doctors were baffled as to what caused his kidney failure, but genetic testing later revealed the cause.  Senior-Løken syndrome causes cystic kidney disease called nephronophthisis.  

Since October 2021, Aidan has been on peritoneal dialysis for 10-12 hours each day. He keeps his spirits up by watching all things Star Wars, reading, and playing video games with his ever-loyal cat, Chief, by his side.  While he thinks no one is looking, he also likes to snuggle and watch movies with his little sister, Kennedy.  

It is our hope that we can find a living donor as a living kidney typically lasts longer.  Given Aidan’s age, he will most likely need another transplant down the road, so we want this one to last as long as possible.  Aidan has been accepted at Texas Children’s Hospital in Houston, TX, for his transplant.  Travel from Amarillo to Houston sounds easy, but Texas is a big state!  It is a 9-hour drive or 2-hour flight.  This will displace the family for about 6 weeks when transplant time comes.  This will be a costly trip, but we can’t wait for it to happen!  The family is fervently praying for a perfect match so that Aidan can begin to live like a normal teenager again.  

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

If you are interested in donating a kidney, we would be happy to talk with you more about the process, or below is the contact information for our living donor coordinator:

Jane DeLeon, BSN, RN, CNOR
RN Coordinator – Transplant 
Phone: 832-355-7061
Fax:  832-398-7717
JDeleon@stlukeshealth.org 

If you are a prayerful person, we will take all the prayers and positive vibes you have to offer.  
#shareyourspare #aidansjourney 

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 our families, and gifts to COTA are tax deductible to the fullest extent of the law.