Overcoming Movement Disorder

April 2, 2011

Museum of Ancient Life

Posted by Cristina Topics: family , friends , fun , picture

1 comment :

AnonymousApril 3, 2011 at 11:57 AM
Such a great experience for Bertrand! (And museum-geeky people like me.) Made possible, I choose to mention, by a well-fitting wheelchair and parents (who are likely museum-loving like me).

That last photo - he steals my heart with every smile!
Barbara
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N-glycanase (NGLY1) deficiency awareness, diagnosis, research, and support.

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Bertrand is the first case of N-glycanase deficiency in medical literature.

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The article from The Journal of Medical Genetics is open access. (Bertrand and parents are "Trio 2" in the study.)

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About Bertrand

Born in December 2007, Bertrand is a charming, serious, young man. He lives in Salt Lake City, UT and has global developmental delays (0-6 months-old developmental), brain damage, intractable multifocal epilepsy, peripheral neuropathy, liver damage, osteopenia, cortical visual impairment, movement disorder, and alacrima (lack of tears) resulting in corneal erosion.

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