FAIR OAKS, Calif. — Livia and Maddox Ventura are typical teenagers. At 19-years-old Livia collects Harry Styles records and at 17-years-old Maddox is a major basketball fan.
"People look at us and think we're completely healthy but we are really not at all," said Livia.
"I just feel tired and off all the time," said Maddox.
They're both battling Autosomal Recessive Polycystic Kidney Disease. It's a rare genetic disorder found in 1 in 20,000 U.S. births causing renal failure.
Their mother Erica says at 20-months-old, Maddox had an enlarged abdomen. After some tests, doctors found he had the disease and tested three-year-old Livia for it as well.
"We knew it would end in transplant but we weren't sure exactly how many organs would be transplanted," said Erica. "Everything changed. 'What is their future going to look like? What can we anticipate?' You're living in this space of unknown and it's scary."
For the last 15 years they've had to juggle medication and hospital stays with social lives and school work with an organ transplant on the horizon.
"It's always been really scary but my mom has always tried to look at the positive in it and how it will benefit us rather than being scared of it," said Livia.
She needs a kidney and Maddox needs both a kidney and a liver. He's currently awaiting a donor.
"It has to be a deceased donor. No one in the family can test for him, so we're just waiting. It could be any minute, tomorrow," said Erica.
An organ transplant alone costs around $120,000, but that's not the only cost these families have to endure. Post-transplant there are life-long medications that often end up costing more than the surgery in the long run.
The siblings are also getting care at UCSF, meaning they have to travel to the Bay Area. For the Venturas, all these expenses doubled.
"We have travel expenses, I have to rehome for two to three months per kid and then both of the kids will have multiple transplants, so this is just the first round of it," said Erica.
That's where the Children's Organ Transplant Association comes in. The nonprofit's volunteers fundraise on behalf of the family, giving them access to funds for a lifetime.
"Honestly we try to stiff-arm mom and dad and say focus on your kids, getting them back to full health, all of the things they need to do to remain intact as a family, and we'll work with the volunteers to make sure that money is raised to pay for those transplant costs," said COTA President Rick Lofgren.
Maddox is expected to undergo a transplant within the next six months, then Livia will go through the process of finding her match. Their mother says she's in awe of her children.
"I can't believe that they have faced this with such bravery and courage, so they blow me away," said Erica.
If you want to contribute to Livia and Maddox's fundraiser, you can visit this website. If you want to learn more about COTA, you can visit this website.
Watch more on ABC10: AAPI history preserved in traditional cookbook with cultural recipes
