My heart broke, but not for Magnolia

Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for Read more about My heart broke, but not for Magnolia[…]

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 Read more about A seizure rollercoaster ride….[…]

Maggie’s hero

This past week, Maggie needed to dress up for school as her hero or a hero. When I found out, I asked her, do you want to dress up as Elsa or Merida, we have both costumes and they are both strong female characters. Her answer was a quick “No”. Do you want to be Read more about Maggie’s hero[…]

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 Read more about Diagnosis day – four years with Rett Syndrome[…]

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 Read more about Celebrity Campaign for Rett Syndrome!!!! #reverserett[…]

Return to Disney

My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do with Magnolia, again. The last time we went to Disney, was the day after Magnolia’s diagnosis. Read more about Return to Disney[…]

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 Read more about It’s not if, its when…[…]