A seizure rollercoaster ride….

I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome  A syndrome where everyone is well rested, sounds amazing. Secondly, Magnolia’s perseverance is unwavering. Every once in a while, I’ll[…]

What a crazy month!

October is Rett Syndrome awareness month, but apparently so is February for Team Magnolia’s Hope. Wow, just wow! I am speechless with the amount of support, love, community, awareness and fundraising we just received this past month. It almost seems as if it was planned, but it wasn’t. The good deeds and love just kept pouring[…]

Soupergirl

If you don’t know, this past month there have been some amazing gestures of kindness and generosity towards us. A few months ago, a mom from Washington DC, Sara, contacted me. Her mom, Marilyn had forwarded her an article I wrote about surviving a disaster with Magnolia. Sara and Marilyn felt compelled to do something.[…]

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[…]

Soccer season success! Buddy included….

Warning! Cute post alert!  Maggie played soccer and had the time of her life. We became a soccer family and it really brightened up our Saturdays. To be able to go to the soccer fields and have Maggie play and be incorporated into a game that AJ played, and almost all of Maggie’s cousins play,[…]

Celebrity Campaign for Rett Syndrome!!!! #reverserett

[embedyt] https://www.youtube.com/watch?v=6QRk1fgEuRU[/embedyt] Today, a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman, Casey Wilson, Paul Scheer, Billy Eichner, Kristen Schaal, June Diane Raphael and Nick Offerman participated in a PSA video and many more will be part of a social[…]