Where we are now…

There are a lot of ways we can measure our journey with Rett Syndrome. We can measure by the way we have grown and adapted, by what we have done to fundraise or raise awareness. The reality is the most noticeable measure is how Rett Syndrome has progressed. At times it seemed slow and manageable, Read more about Where we are now…[…]

Scoliosis, kyphosis and other symptoms causing symptoms?

And now introducing Scoliosis and Kyphosis. Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty. While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown. Kyphosis is the excessive outward curvature of the spine, Read more about Scoliosis, kyphosis and other symptoms causing symptoms?[…]

The Scoliosis Scare

When we were first told about Rett Syndrome the doctor suggested we start immediately on Speech Therapy, Occupational Therapy, Physical Therapy and Hippotherapy.  While the first three were familiar, Hippotherapy was not. “It’s horseback therapy,” we were told.  “For scoliosis,” we were told.  “But she doesn’t have scoliosis,” we reminded the doctor.  “Not yet,” said Read more about The Scoliosis Scare[…]

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 Read more about Symptoms of Rett Syndrome | Share for Awareness[…]