Diagnosis day – four years with Rett Syndrome

Maggie was diagnosed on  12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t lost many skills. She had slowed in development but regression hadn’t fully begun, yet. The[…]

Symptoms of Rett Syndrome | Share for Awareness

  Rett is a progressive disorder – it will get worse and worse until there is a cure.  In other words,  we are never out of the woods.  Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Maggie has lost her speech. Maggie’s arms & hands have Parkinson’s like tremors. Maggie hasn’t[…]