Connor

Nashville, Tennesee, USA

Our son Connor was conceived on October of 2010.  I was pregnant in Germany before being sent back to the United States at seven months.  My doctor told me everything seemed to be going great and I was good to fly back to the U.S.  When it came time for Connor to be born July 9 2011 he was immediately intubated at birth, unable to breathe on his own without his airway collapsing.  We spent the next three and a half months at Vanderbilt Children’s Hospital in Nashville Tennessee where the doctors desperately tried to figure out what was “wrong” with Connor.  Our son had multiple issues; choanal stenosis (closed nasal passages), a deviated airway, tracheo- and laryngomalacia (floppiness of the airway), periventricular leukomalacia (a form of white-matter brain injury), and several dysmorphic features.  After awhile my family began conducting their own research and happened to run across “Marshall Smith Syndrome” it seemed as if we were reading Connor’s medical chart right off of the MSS page.  After presenting the information to his Doctors, Connor had a bone scan at 45 days old.  The results came back that Connor had a bone age of 2.8 yrs and they were able to affectively diagnose him with Marshall Smith Syndrome.  Connor is currently being followed adamantly by his specialists in Vanderbilt Children’s Medical Center in Nashville Tennessee."

Brian and Charlene

(Dad and Mom)