Child with ultra-rare genetic disease gets Star Wars day sendoff at PDX

PORTLAND, Ore. (KOIN) — A 5-year-old boy with a rare genetic disorder got an out-of-this world experience when characters from a galaxy far, far away gave him a proper Star Wars day sendoff at Portland International Airport Sunday morning.

At 17 months old, Raiden Pham was diagnosed with UBA5, an ultra-rare progressive and life-threatening genetic disorder. It can lead to severe movement disability, cognitive impairment, seizures, as well as complications affecting breathing, vision and the gastrointestinal system.

According to OHSU, only 40 children in the entire world have been officially diagnosed.

In a gift made possible by Make-A-Wish Oregon, Raiden and his family received a trip to Disney Aulani in Hawaii.

But as they were making their way to the gate, in-costume volunteers from Star Wars Oregon and the Concordia Clan greeted him in a sendoff fit for a Jedi knight.

Tommy Pham, Raiden’s father, thanked the crowd for being a part of “such a special moment.”

“We’re built on hope,” he said. “We’re on this journey to fight against this rare disease, to raise awareness, to fundraise for research and make the impossible, possible. May the Force be with you.”

In 2021, Raiden’s family also launched the Raiden Science Foundation, which spearheads privately funded research efforts to develop the first-ever clinical trial for UBA5 gene therapy.