US THEN 2016 , The words we have been waiting for… FDA approves Trofinetide for treatment of RETT SYNDROME! This is big news! This isn’t a Continue Reading
Spinning out of control
A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading
Diagnosis: uncertainty
We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of Continue Reading
What would you ask for?
We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading
Surviving Corona
Life was finally moving in a smooth direction. In late February, thanks to new dosing of medications, her seizures were back to being under control, her breathing issues went from a constant struggle to a regular but not constant problem 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
Diagnosis Day – Five years later
On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger. Continue Reading
Where we are now…
There are a lot of ways we can measure our journey with Rett Syndrome. We can measure by the way we have grown and adapted, by what we have done to fundraise or raise awareness. The reality is the most Continue Reading
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 Continue Reading
Chaotic and fun travel Part 2 TEXAS
The stars at night are big and bright….(insert 3 claps) deep in the heart of Texas. Since Magnolia was 2 years old, we haven’t gone to Texas in the summer. First it was too hard to travel because of sensory Continue Reading
