Alysha McMillen beams when she talks about her 20-month-old son, Riley Kamakani.
“I love him more than anything in the world,” McMillen said.
She and her husband Joshua knew something wasn’t right with Riley.
“When they did the liver biopsy, they found no bile ducts on his liver and the specialist there said it was Alligile Syndrome,” McMillen said.
Bile carries toxins and waste products out of the body and helps digests fats and vitamins.
“He can’t drain any of his bile, so he’s always yellow,” McMillen said. “Because he can’t drain, he gets really itchy and he scratches his face, his arms.”
Riley has also developed osteoporosis because his body isn’t getting enough vitamins, leaving his bones brittle. He recently got out of a full body cast.
“It breaks me and my husband’s heart,” McMillen said.
She’s often left in tears when they take Riley out in public.
“People look at him like he’s the most disgusting thing or they call their kids away. They don’t want him to play with them like he’s contagious,” McMillen said.
“When he gets really yellow, he kind of looks green and he’s had people call him ‘The Hulk’ before,” McMillen said.
A liver transplant may be an option someday, but not yet.
“They said possibly between 3 and 4, his liver could grow bile ducts,” McMillen said. “All we can do now is hope and pray.”
McMillen is grateful for their doctors, Dr. Tamara Todd in Hilo and Dr. Jeremy King at the Kapiolani Medical Center and her husband’s boss, Mua Merryman. She hopes by coming forward, she is helping other families.
“Maybe there’s other cases in Hawaii that people just don’t know about,” McMillen said.
While educating those who need to be educated.
“These people, they judge just by what they see and they don’t know the facts,” McMillen said.