It’s not if, its when…

The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I[…]

Take a breath

It’s been awhile since we posted anything here.  After Rett Syndrome Awareness month, we’re emotionally and physically drained.  The event is an intense amount of work, the awareness and videos takes up time too.  On top of that, Maggie’s health is hit or miss – somedays she’s ok, others it’s a real struggle for her[…]

#TakeThatRett

I see #takethatrett as a rallying cry every now and again.  When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs.  It’s wonderful to see girls pushing through the hardship that Rett has dealt them.  And considering how Mggie’s been doing lately, slowly getting back to[…]