I didn't expect to find out this way. I wasn't quite ready for confirmation yet that my youngest child also has Stickler Syndrome. The blood work had been sent off to genetics weeks prior, and even though I studied his facial features and saw right away that his tiny baby elbows were hyper-mobile (some call [...]
Category: Stickler Syndrome and Us
Tetralogy of Fallot – Henry’s Diagnosis
I am a superstitious person. Not a, "don't cross a black cat or walk under a ladder," kind of superstitious, but more of a, "it's my fault, because I jinxed it," superstitous. My superstition started in grade school, from something as small as thinking I aced a test but spoke too confident and failed it, [...]
Stickler Syndrome Diagnosis – Our Story
After his vitrectomy surgery, his recovery required him to remain face down for 12 hours a day over a two week period. He was seven months old. When I asked Dr. Shapiro how we were supposed to do that, he reluctantly replied that he didn't know- there is no data for an infant with this repair and recovery.