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About UBA5 and the Pham Family

Raiden Pham is the son of Tommy Pham, named after the God of Thunder (Japanese mythology) – Raiden Pham ‚ö°Raiden suffers from a life-threatening genetic condition called UBA5 disorder. Even with no current treatment for this rare disease, Tommy is not giving up to find the cure. He is in a race against time to find a cure…and it is not too late. Trapped in his body with no mobility and abnormal brain development He was born on Feb. 26th, 2020, and was diagnosed with a rare genetic mutation in Aug. 2021. We had a discussion with Tommy to learn more.

When Raiden was just 17 months old, he received the UBA5 diagnosis on August 2nd, 2021. It came after a long and exhausting journey of countless doctor visits, hospital stays, and frustrating encounters with medical professionals. Despite all the tests conducted, everything seemed normal, yet Raiden’s development was not progressing as expected. We took matters into our own hands and became advocates for Raiden. We did our research and fought to get him comprehensive genetic testing. If we hadn’t taken action, I don’t think we would have the answers we have today. Raiden might have been diagnosed with quadriplegic cerebral palsy without a true underlying cause. Raiden’s condition has rendered him completely dependent on round-the-clock care, as he remains trapped within his own body. He is unable to interact with other children or the world around him, lying there with a vibrant spirit but lacking the ability to sit up or even grasp a toy intentionally. His day-to-day life is devoid of any form of self-care, and at the age of 3, his cognitive abilities are still in their infancy. For more information on our journey, see the links below:

Raiden Science Foundation

David's Guide: Finding a cure for Raiden