When the weather dumps rain all over Los Angeles and dumps snow in the mountains. Sometimes you just need to make a trip to play in the snow. Living in Los Angeles, we are only an hour and a half Continue Reading
20/20
We leave for NYC next week and couldn’t be more excited. Well, we could be a little more excited. Maggie came down with a cold and we are walking on pins and needles waiting to see what happens. But fortunately, Continue Reading
Goodbye 2016, Hello 2017
https://www.youtube.com/watch?v=2bjEJmDzvMo Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown Continue Reading
Living life
We have so many days that are great. We try to live each day as positively as we can. We are a work in progress but we are trying to find balance in our lives, caring for Maggie, enjoying the Continue Reading
Rettland Foundation
When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having Continue Reading
13.1
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew Continue Reading
Maggie is 5
I have so many emotions about Maggie turning 5 today. Excited, sad, amazed, proud, scared and blessed to name a few The years seem to be moving by so quickly and yet also in slow motion. I want the years Continue Reading
Symptoms of Rett Syndrome | Share for Awareness
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Continue Reading
“Go Potty”
We had been potty training when Maggie started going through regression. We hadn’t made it to wearing panties but she was understanding the concept. After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Continue Reading
The waiting game
For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status. Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about Continue Reading
