Tommy and Linda Pham turned their heartbreak over their son Raiden’s ultra-rare disease diagnosis, UBA5 disorder, into hope for others. There are only 30 known cases in the world, but the Phams’ relentless determination and their partnership with UMass Chan Medical School could pave the way for gene therapy advancements.
“As parents, we are going to fight with him till the end.”
What is UBA5?
UBA5 disorder is a life-threatening, progressive neurological disorder. It typically involves muscle floppiness as well as stiffness, seizures, movement disorder, brain abnormalities, intellectual disability, poor head growth and failure to thrive.
Raiden Pham sits in wheelchair at home. Photo: Carl-Ulrich Bonnecamp
Linda and Tommy Pham care of their son, Raiden. Photo: Carl-Ulrich Bonnecamp
Raiden lies on the bed as his mother, Linda Pham, cares for him. Photo: Carl-Ulrich Bonnecamp
Linda Pham holds her son, Raiden, while working on the computer. Photo: Carl-Ulrich Bonnecamp
Linda Pham smiles as her son, Raiden, plays with his toys. Photo: Carl-Ulrich Bonnecamp
Listen and subscribe to all episodes of Rare Diseases, Real Stories
To learn more about the Raiden Science Foundation, visit the foundation’s website at: https://www.raidenscience.org/.
Follow Raiden’s journey on Instagram: @raiden_journey.
UBA5 disorder resources and support
Raiden Science Foundation
Translational Institute for Molecular Therapeutics at UMass Chan Medical School
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#RareDiseasesRealStories, #RareDiseases, #podcast
