PHOENIX - April is National Donate Life Month, and this week is National Pediatric Transplant Week, which focuses on getting kids the organ transplants they need to live a healthy life.
This is all happening as an 11-year-old Arizonan is still on the waiting list for a kidney.
Phoenix Children's Hospital put Tristan Black on the National Organ Transplant Waiting List in March 2020, and for most of his life, he has been living with a rare disease.
"It kind of puts a hold on life," said Tristan's mother, Sierra Kolomitz.
Sierra and Bobby Kolomitz have been by their son's side since the beginning. At 17 months old, Tristan went to the hospital with a high fever and rash. It took doctors three years to diagnose Tristan with Midaortic Syndrome, a disease that affects the heart's largest blood vessel, ultimately causing poor kidney function.
Tristan Black (Courtesy: Sierra Kolomitz)
In March 2020, Tristan's kidney was removed, and he has been on dialysis for more than a year.
"We have to do super extra to keep him away from the virus. We always have to be home at a certain time of the night to get him connected to his dialysis machine. Gotta make sure we have all our medications with us anytime we go anywhere. He can't go swimming. He has dietary restrictions," said Sierra.
Tristan is often hooked up to a dialysis machine for 12 hours a day. Sierra says the ongoing COVID-19 pandemic impacted the chances of waitlist candidates to get the organs they need.
"A lot of people who passed away from the disease, unfortunately, even if they were a donor, they can't accept those organs," said Sierra.
Tristan's family and friends have all stepped up to see if they can be living kidney donors.
"Our community is the best there is," said Bobby.
There is no match yet, but hope is still very much alive that someone can save Tristan.
"I don't think there's words to express the gratitude we have for them, to be able to try to give him a little bit more normalcy to his childhood," said Sierra.
Register as an organ donor at Donor Network of Arizona