A two-year-old Hilo boy battling a rare genetic condition may soon be getting a second chance at life.
We first met Riley Kamakani McMillen last September after a liver biopsy revealed he had no bile ducts on his liver.
Because he was unable to drain bile, which carries toxins and waste products out of the body, Riley was always yellow and on some days green.
Children would tease him and other parents thought he was contagious.
“He keeps going, he keeps being strong. We’ve had our ups and downs,” Riley’s mom, Alysha McMillen, told KHON2 by phone from Calif.
Doctors said a liver transplant could one day save his life, but only if he was strong enough to receive one.
That day may have arrived. On Monday, Riley will go through scans as part of the process for a liver transplant.
“They’re going to go in through his groin and up to his heart to watch it in real time. It’s like a checkup to get him all clear for being active on the liver list,” Alysha McMillen said. “It could happen anytime starting Tuesday and anytime after. They could call us in two weeks (and say) we have a liver and he’ll get a liver.”
But the journey to get this point has not been a smooth ride. Last year, Riley endured four bouts with pneumonia.
Then, in December, the McMillens left for California for treatment, where Riley underwent open heart surgery.
“It’s been a really long battle. It’s been hard being away from home and family and friends,” Alysha McMillen said.
While insurance is covering Riley’s medical bills, other expenses are adding up. Alysha has not been able to work and the family has lost state benefits.
“They said we’re not in Hawaii. We’re no longer residents, so we have to apply here in California, and California says no, you’re not residents of here. You’ve got to sign up back home,” Alysha McMillen said. “We’re kind of caught in the middle, so what is right?”
KHON2 called the state and asked what could be done to help the family. The state said they’d help the family reapply for for benefits in the state that was convenient for them, and if they needed help applying for Medicaid, they’d help with that as well.
“These kind of situations you can either pull together or push apart,” Alysha McMillen said.
They’re choosing to pull together. If you’d like to help the family with mounting bills, click here.