PORTLAND, Ore. (KOIN) — Raiden Pham is now 3 1/2 years old. When his parents, Tommy and Linda Pham, spoke with KOIN 6 News about 2 years ago, they had just learned he has a rare and life-threatening progressive, neurological disorder called UBA5 disease.

Raiden can’t walk or talk. UBA5 disease can cause seizures, brain abnormalities and intellectual disability — and there are just a few dozen cases in the world.

Tommy and Linda Pham set out on a mission to do what they could to save Raiden. They began raising money and launched the Raiden Science Foundation. Over these past 2 years, they’ve raised close to $1 million and there are now 4 medical institutions researching UBA5 disease, including OHSU. The others are Baylor, U-Mass and St. Jude Children’s Research Hospital.

“UBA5 is an important enzyme inside your cells that is used to signal for different stress, so if you don’t have that working properly your cells undergo this stress,” said Dr. Jonathan Pruneda, a Ph.D assistant professor in microbiology at OHSU.

Donate: Raiden Science Foundation

Pruneda said they done some similar studies with different diseases. When Tommy Pham contacted them, it seemed like a good fit.

He and the OHSU team used a controlled test tube environment to pinpoint UBA5 mutations and were able to see if they were mild or severe.

“With Raiden what’s reassuring — what we know from our work — is that he has two fairly mild mutations. He has two copies. So we know he has a bit of time,” Pruneda said. “And that’s reassuring because what we’re going toward now is actual drug screening to find molecules as drugs that can actually correct those mutations and restore the function.”

Pruneda and his team are now looking at creating treatments based on their research, but much more testing is needed. And all of the research requires funding.

The Phams said if the funding stops — and they’re hoping to raise $3 million more — so does the work that might save their son. It’s the research that fuels their hope.

Raiden Pham with his parents and sister (Courtesy: Raiden Science Foundation)
Raiden Pham with his parents and sister (Courtesy: Raiden Science Foundation)

“It gives us hope that one day, if he can ever say ‘Mommy,’ that’s all. That would be the best thing for me. I hope for that all the time,” Linda Pham said.