The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took Continue Reading
Seizures, part 2….
Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. Continue Reading
Seizures, ugh?!
We are on our way to CHLA today for a 48 hour video EEG. Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed Continue Reading
Cali Snow Day
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
Take a breath
It’s been awhile since we posted anything here. After Rett Syndrome Awareness month, we’re emotionally and physically drained. The event is an intense amount of work, the awareness and videos takes up time too. On top of that, Maggie’s health 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
#TakeThatRett
https://youtu.be/atAEaJ0FH3w I see #takethatrett as a rallying cry every now and again. When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs. It’s wonderful to see girls pushing through the hardship 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
