BEAVERTON, Oregon — It was pure joy for Linda and Tommy Pham to bring a baby boy into the world in February of 2020. The boy was their second child, and they named him Raiden.
All was fine at first, but it did not last.
“After three months everything just took a turn unfortunately," said Linda. "He wasn't meeting those milestones and as a mom and dad, we knew something was wrong."
The mother said Raiden began vomiting constantly, and the baby's body contorted. As the days passed, it became clear Raiden was not developing normally and could not control his body.
There were numerous medical visits and a 10-day hospital stay. First, Raiden got a feeding tube through the nose. When that made things worse, he got a feeding tube through the stomach.
Tommy and Linda eventually learned what was wrong, thanks to a specialist at Oregon Health and Science University (OHSU) who looked at all 20,000 of the baby's genes.
“That's how we found out he has this ultra-rare gene mutation caused by the UBA5 gene,” said the boy's father, who added that there are only about 30 documented cases in the world.
Getting the news their son is one of those rare cases was heartbreaking, he said, because as result of the gene mutation, Raiden has a progressive neurological disorder that could be deadly.
“All parents want to have the best life for their kids. And when we found out that evening, my heart… when I look back, to this day, I get so emotional,” said Linda.
With no cure and no established therapy, the family was devastated.
“But as parents, what can you do? Are you going to sit back or are you going to fight and raise awareness and share the story? Because the reality is if we're able to treat Raiden, we're going to be able to help other kids as well.
Along with raising awareness, the Phams started the Raiden Science Foundation to raise money for research into UBA5 gene replacement therapy. They said they will need to raise at least $3 million over time.
Since last Thanksgiving, they've raised about $350,000. The Phams said they're incredibly grateful for the support that's allowed them to team up with doctors at the University of Massachusetts to get to work, hopefully in time for their son and for others in the future.
“If one thing I can do in my life now is to help find a cure or a treatment, that would be my life's goal at this point," said Linda. "I'd never give up, even for one child."
Tommy added, “At the end of the day, we want our journey, even the foundation, to represent a symbol like hope, inspiration, love and just humanity, like people coming together to make something impossible possible.”
If you'd like to help, there is a GoFundMe link on the Raiden Science Foundation website.