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Spinal muscular atrophy with respiratory distress type 1 stories


TRUETT


Truett is technically undiagnosed, although some doctors at Childrens Hospital of Colorado and Johns Hopkins Hospital in Baltimore believe he has a unknown version of SMARD. On the SMARD gene, he has one variance and one "normal" spelling. True...

Views: 621 Feb 9, 2016, 6:42 PM by Truett

KATE'S STORY


Kate started showing symptoms at 6 weeks old and passed away at 12.5 weeks old.  Her official SMARD1 diagnosis wasn't received until 2 weeks after her death.  her full story can be found here:  http://karryonkate.blogspot.com/p/about-...

Views: 607 Feb 9, 2016, 9:51 PM by Kate

OUR SON


Our son had SMARD.  He died in 2005 aged 18 weeks.

Views: 599 Feb 10, 2016, 3:29 PM by Angela

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