Overcoming Movement Disorder

July 9, 2012

Home At Last!

Posted by Cristina Topics: ENT , hospitalization , picture , steroids

3 comments :

CarrieJuly 9, 2012 at 9:32 PM
Thank goodness! <3 <3
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MarianJuly 9, 2012 at 11:20 PM
Hooray! And on a side note, my GOD that kid has gotten big. He looks like he's six at the very least :).
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AngieJuly 10, 2012 at 9:58 AM
I am SO glad he is home and safe and also that he likes the balloon :)
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NGLY1.org

N-glycanase (NGLY1) deficiency awareness, diagnosis, research, and support.

Medical Journey

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

It took 4 years and a team of remarkable researchers to receive this diagnosis.

A synopsis of Bertrand's medical journey (on his dad's blog).

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

The New Yorker

June 21, 2014 One of a Kind
What do you do if your child has a condition new to science?

Salt Lake Tribune

November 25, 2012 Saving Buddy Utah couple races to help son with unique genetic disorder.

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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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Now I Can is a nonprofit 501(c)(3) charitable organization dedicated to helping disabled children reach their greatest potential through intensive physical therapy. Bertrand has benefited greatly from sessions there: Oct 2011, Dec 2011, May 2012, Aug 2012. His next session will be in July 2013.

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