Beaverton parents race against clock to find treatment for rare genetic disorder: ‘Do whatever it takes’
Two-and-a-half-year-old Raiden Pham loves knocking down blocks and playing with his older sister Jordan. What you can’t see at first glance is he’s dealing with a rare genetic disorder called UBA5, which makes day-to-day life challenging for him and his parents Linda and Tommy Pham.
“He can’t walk, he can’t talk, he can’t sit, he barely has any head control, so we care for him 24/7. He is, via g-tube, fed, so, stomach fed. We feed him around the clock,” Linda said.
They first found out about his genetic disorder in 2021 and knew they had to do something to help their son and other kids suffering from UBA5, because many kids diagnosed with this have short lifespans.
“That day was the darkest day of my life. Darkest. The fact that there was, what we read, no cure, no nothing, broke our hearts,” Linda said.
Since then, they’ve created the Raiden Science Foundation to raise awareness and money for this debilitating, life-threatening disease – oftentimes sacrificing family time between research, doctors’ appointments and their full-time jobs.
“It’s just a lot. We don’t have time to sit back and take a break,” Tommy said.
“We’re going to do whatever we can for our son. For me, as a mom, I think about that every single day. It’s like, what’s next for him? What if we don’t find a cure? What if we do find a cure? But I don’t want anyone else to go through what we’ve gone through. For me, as a mom, I will do whatever it takes even if it helps one kid, if it’s too late for my son or not,” Linda said.
Dr. Ruth Napier is an assistant professor at OHSU and the Chief Scientific Officer at RSF. She said OHSU’s Knight Cancer Institute has been making big strides in developing a treatment alongside the University of Massachusetts and other research groups.
“We at RSF (Raiden Science Foundation) are funding the first-ever gene therapy for UBA5 which really just means that treatment will be given to children that will actually give them the non-mutated version of that enzyme specifically in the central nervous system, what the disease affects, and ultimately restores their health, that’s what we’re hoping,” Napier said.
This research gives the Phams hope when they need it most.
“This is no longer just hope, literally it’s becoming reality,” Tommy said.
At Sunday’s Trailblazer’s game, the Phams will be featured during halftime to raise awareness about the disorder. Fans can either donate or pledge a donation based on how many 3-pointers are made by the Blazers or Mavericks. Fans can pledge here or donate to their foundation, Raiden Science Foundation.
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