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-...
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...
1 people with Spinal muscular atrophy with respiratory distress type 1 have taken the SF36 survey. Mean of Spinal muscular atrophy with respiratory distress type 1 is 1240 points (34 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey