“Nothing is more beautiful than a real smile that has struggled through tears.”

- Unknown

Alex has a sweet smile that melts the heart of everyone he meets,

but for over 10 years a cruel debilitating disease slowly robbed his abilities, one after another. Alex is physically and verbally challenged, but remains cognitively conscious. Countless medical and genetic testing and some of the best physicians, scientists and researchers in the world were perplexed by his condition. Then in 2018, through miraculous intervention, Alex’s genetic data was reanalyzed and he was found to have a newly discovered, rare, non-inherited, spontaneous genetic disease called NEDAMSS (Neurodevelopmental Disorder with Regression, Abnormal Movements, Loss of Speech, and Seizures)  or IRF2BPL related disorder. Currently there is no treatment or cure.

Alex's Diagnostic Odyssey from Caroline Cheung on Vimeo.

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How to help Alex and the other brave kids enduring this rare disease.

• Spread awareness and encourage others to take action by sharing Alex’s story.
• Push for reanalysis of undiagnosed cold cases. Without a diagnosis, patients and their families are in the dark fighting an unknown enemy. 
• Support research for treatment and cure of ​NEDAMSS/IRF2BPL related disorder.