Teagan :: SMARD Type 1

Teagan Rose was born a healthy little girl on May 03, 2009 with no sign of disease other than slightly inverted feet. Weighing in at 8 pounds 11 ounces there was no thought that a genetic defect lay within. At approximately 8 months old she started having difficulty eating and at times full out refused. This was when she had her first visit to Valley Children’s Hospital of Central California. Soon after she had a surgical placation of her diaphragm and went home. Less than a month later she started refusing to eat again and her breathing became labored, thus she returned to the hospital. (Doctors where stumped and could not figure out what was really going on to cause her muscle degeneration. It would be six months before the answer was found.) She then, at 10 months, had a tracheotomy and was placed on permanent Ventilator support. Soon after that she also received a g-tube (button) for direct feeding to the stomach. She then remained at Children’s Hospital until she was 13 months old. Two weeks after she went home the diagnosis was delivered. SMARD type 1 a very rare genetic disorder from the muscular dystrophy family with approximately 60 known patients world wide. From the time she went home at 13 months she did very well and grew at a slow but steady pace but never gaining proper weight. She had never gotten the muscle strength to walk or crawl and was limited by her machines on movement. Then about a year ago she started very randomly getting sick to her stomach and was unable to keep her food down. She had been in and out of the hospital at least monthly until late June of last year at which point she had been a resident of Valley Children’s Hospital. Though the doctors had called in consultation they were unable to find a course of treatment that would be able to give her a longer life without causing more life threatening problems than she already faced. Teagan passed away October 5, 2013 at just 4 years old surrounded by her loving family.

For more information on Teagan’s condition click HERE to read up on SMARD Type 1.