SAN ANTONIO — This week marked a new school year for thousands of kids, but for one second grader, it also marked the return to a normal life, made possible by a new kidney and new liver.
Josiah Aguinaga had been living with a rare debilitating kidney disease until a miracle phone call exactly one year ago.
When you first meet Josiah and see his spunk, you would never guess what he’d been through.
Like most kids, he loves video games, however, playing was not always an option.
"He was there at the hospital like probably every month. He was always sick,” Josiah’s mom Erika said as she described the grueling journey of their son fighting a devastating kidney disease.
His entire life, the 7-year-old was in a race against the clock.
“There's been some challenging times,” Josiah’s dad Michael recalled. “It’s been a roller coaster.”
It was an emotional ride full of ups and downs for the family and it all started when Josiah was born with a rare genetic disorder known as Autosomal recessive polycystic kidney disease or ARPKD. The disease makes the kidneys have fluid-filled cysts which make the kidneys too big or enlarged, often leading to kidney failure before adulthood.
"Seeing everything he's been through and as parents, you know, you want to help as much as you can, and in a situation like that, you can't do anything,” Michael said.
Feeling helpless, Michael and Erika say they did all that they could to make Josiah feel as normal as possible, however his low immunity forced him to miss a lot of school. His parents say he was unable to live life, like the rest of his friends.
"He couldn't have French fries. He couldn't have ketchup,” Michael said. "Kids would go running around and he would run maybe ten, 15 ft and he would be tired."
Josiah’s disease quickly progressed as he got older, and at just 6-years-old last summer, he was put on dialysis before being added to the organ transplant waiting list.
"They told us he's going to need a kidney and a liver transplant together. It takes years for somebody to get a transplant,” Erika recalled. “I thought, 'well, if it's a kidney and liver, I'm pretty sure it's going to be, you know, years from now.'"
By some miracle, the family received a phone call just a week later instead of the expected years-long wait.
In August 2023, Josiah went under the knife.
His prayer warriors had his back as his parents leaned on the San Antonio Polycystic Kidney Disease (PKD) community for support through a trying recovery process.
"It helps a lot in connecting with families,” Erika said as her husband echoed her feelings. Michael added they’re sharing their journey in hopes of helping other families.
“We found a lot of support," Michael said. "If I can give any kind of advice to anybody: don't think you're in it by yourself.”
The family is now a big part of the San Antono Walk for PKD which brings people together from all over the community while raising awareness and providing resources for families suffering from PKD and ARPKD.
“The best advice we've ever gotten, just reaching out for the resources and finding out about the walk and just letting people know that you're not alone,” Michael said.
Now, one year later since Josiah’s kidney and liver transplant surgery, the conversation between Josiah and his parents has drastically changed.
“You're going to live a normal life,” Erika said explaining what she now shares with Josiah. “You're not going to have to be on dialysis. You're going to be able to do things and you're not going to have to be connected to a machine.”
Even more exciting, Josiah returned to school for the first time this year after missing most of last year, only now, he has a new kidney and new liver that saved his life.
He started second grade at Lytle Elementary on Aug. 13. Josiah says, “he feels excited and healthy.”
He’s now ready to take on second grade like a champ with his favorite part of the day being “recess and being with my friends too.”
During our interview, Josiah was filled with energy, and watching him, his parents were filled with relief and joy as their vibrant little hero danced around the house.
“Where he was to where he is now, it really is amazing, man,” Michael said. “He's eating pizza. He's eating spaghetti now and he absolutely loves it.”
The Aguinaga family will be returning for the annual San Antonio PKD community walk.
KENS 5 is partnering with them in support of the cause. Anchor Sarah Forgany will return as emcee for the 13th year and we’re asking the community to join us in support of the Aguinagas and other families.
The PKD Walk is taking place Sept. 14 at OP Schnabel Park. To learn more about PKD and register for the walk, click here.