Back to school on April 11

We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year.  She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain back her strength, balance and walking ability, being at home has allowed her to focus[…]

Why the #hopeisreal…

Last week, Jenny and I wrapped up our formal fundraising efforts for this year.  Our friend, Jaime Morgenstern, who runs Gilt City events gives us a booth and donates some money to RSRT.  They also donate a bunch of liquor and wine for future Rett Syndrome events.  It’s very generous and we’re grateful she thought[…]

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[…]