If you have been following us for awhile, you know that we focus on three main goals. Awareness for Rett Syndrome, fundraising for Rett Syndrome organizations, and living life as best we can. When Covid hit, our focus shifted. Those Continue Reading
The journey of our documentary
In 2019 we released our trailer for our documentary with the intention that 2020 would be the year we would share it. Little did we know how hard that would end up being. We were having a very exciting 2019 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
Positive moments
Everyday I try to focus on the positive. I thought I would share some of my positivity with you. Here’s 10 moments during this pandemic that have made me realize, life isn’t so bad. (scroll down for blog) Top 10 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
We are not alone….
We have a special treat. Sara Polon reached out to us a few years ago and has been consistently supporting us by raising awareness for Rett Syndrome, fundraising through her business, Soupergirl; and sending us soup to lift our spirits Continue Reading
Let’s play ball!
Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool. It’s been a tough few months Continue Reading
Should we go to the ER?
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
