For the past four years, the holiday season has been one that we have dreaded. What should be a joyous and uplifting time of year, is filled with pain and sadness. AJ and I push through each season and take Continue Reading
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 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
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 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
Memorial Day weekend
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the Continue Reading
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 Continue Reading
Seizures, part 2….
Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. Continue Reading
Seizures, ugh?!
We are on our way to CHLA today for a 48 hour video EEG. Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed Continue Reading
Being a part of history
Looking back, it seems so long ago that Maggie was a part of the Trofinitide clinical trial. At 5 years old, my little girl went through 10 weeks of weekly appointments in a different city, to change her life. How Continue Reading
