I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; Continue Reading
Waves of crashing emotions
If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of Continue Reading
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 Continue Reading
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 Continue Reading
Goodbye 2016, Hello 2017
https://www.youtube.com/watch?v=2bjEJmDzvMo Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown Continue Reading
Dealing with illness with grace
I’ve blogged about Maggie being sick. A lot. It’s the worst. Having a sick kid is always hard, but having a sick kid who can’t tell you what’s bothering them and can’t control their body to blow their nose, spit Continue Reading
The First Annual Gaga For a Cure
Guest blog – submitted by my brother Steve Tesler with help from Maggie’s cousins, Leo and Zeke Tesler. So grateful to have a village of people who go the extra mile. https://youtu.be/y6LflUvtPCg Every December for the past couple of Continue Reading
Rettland Foundation
When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having Continue Reading
13.1
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew Continue Reading
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. Continue Reading
