I wanted to share a post from a fabulous CDKL5 mom who lives in Australia and had a beautiful son with CDKL5 and has twin daughters with CDKL5. Because of her family the gene was identified and now kids are able to be diagnosed all across the world. They are the pioneers in CDKL5 and …
Please vote daily for IFCR in the Pepsi Refresh Project! You can vote easily from my blog or from http://CDKL5.com and also text daily 102973 to 73774.Lily has seizures every single day of her life. Every single day. Lily can’t say one word. She can’t feed herself. CDKL5 stole everything from her and we just …
Wow! What a weekend! Andrew and I had a little “staycation” in Scottsdale Friday night, our anniversary was Wednesday August 18th and Grandma Cheryl was here in town to help out with Splash for a Cure. We took advantage of her to watch the kids and advantage of the awesome rates you can get at …
2 days until the big day! The day I have been stressing out about for the last 2 months! I am excited, nervous and well freaking out. I am sooooo not a party planner, I am not someone who asks for anything. This is every bit out of my comfort zone, yet I’m amazed at …
Click on blog title. You do have to register and then put in search IFCR. It is a few steps, but it is worth it! Thanks!FuelingGood.com
Trying to wrap up my weekend at the Rett Syndrome Family Conference is not an easy task and not a task I have been interested in doing. Well I take that back, I really want to write it, I just want it written and posted with out me putting any effort into it. Is that …
I am so excited! I booked a trip to Colorado Springs for Memorial Weekend! All by myself! Why, you ask? Because that is where the Rett Syndrome Family Conference is! Bringing my family is not an option, so Andrew is staying home with the kiddos. The coolest thing about it all is that I was …
I haven’t posted much lately, not for a lack of things going on and not for a lack of words. I was honored by being asked to write one of the letters welcoming families to the CDKL5 diagnosis on the new CDKL5 website (set to launch end of March!! No worries I’ll link it up …
Calm Amongst the Chaos 
