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
Surfer girl
A week of surf camp was not enough. What an unexpectedly amazing week we had in Long Beach, NY. Magnolia has always loved surfing, we have been getting adapted surf lessons since she was 6 years old. She is now Continue Reading
Its just a phase….
When Magnolia was 2. doctors would tell me, “It’s just a phase.” No matter what I would bring up to them. Of course with her, it wasn’t just a phase, it was Rett Syndrome. Actually for her it was a Continue Reading
The gift of conversation
A hard 5 minute conversation for you, could be a gift of a lifetime of actual conversations for my child. As we start the new school year, at a new school, with new friends that is all I can think Continue Reading
Featured in Parents.com
Every year one of my resolutions is to write more. I make a list of favorite online magazines, tell myself I’m going to submit an essay or article to them. This year was no different. Except this year, I would 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
