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
In sickness and in health….preferably health
I am trying to relax, it isn’t easy. On days that I feel good, I often do too much. Last week when I woke up, I felt great. So I did three loads of laundry, went for a walk, did 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
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
The Aruba nightmare
Before Rett Syndrome, before hospital visits and a scary diagnosis. We were just a tiny family dealing with ordinary issues. I thought I would do a flashback post to when Magnolia was one year old and we went to Aruba. Continue Reading
Sk8tr girl Surfer girl
I have a skater girl, surfer girl, extreme sport loving girl. I could not love her more. She may not have all of the abilities, but she has the heart. Last year, when she asked for a skateboard on her Continue Reading
Chaotic and fun summer travel
A recipe for a crazy but fun summer vacation. Ingredients One crazy independent toddler One amazing and strong kid with Rett, One busy, multitasking and exhausted dad One overwhelmed but happy mom Directions Knead all ingredients together. Add in a Continue Reading
What a crazy month!
October is Rett Syndrome awareness month, but apparently so is February for Team Magnolia’s Hope. Wow, just wow! I am speechless with the amount of support, love, community, awareness and fundraising we just received this past month. It almost seems as Continue Reading
