Today is Rare Disease Day and this year’s theme is: Day-by-day, hand-in-hand. I personally love that there is a strong movement of many coming together, from all corners, representing thousands …
Adventure Style
As wonderful as October was, I was so happy to have it over. I wanted to hide under a rock and attempt to process all of the ups and downs, …
What I Am Giving
I’ve never pretended to be a sane person, that in itself would be ludicrous. However, when I found out last September that the two clinical trials for Rett Syndrome were …
Please Help
We are in one of the most trying seasons of our life right now. Rett Syndrome is hard. Not giving Claire something for it after seeing the shots help is …
Wash Out
It is hard to believe that we’ve been home a week already. I thought that we had done a pretty good job of balancing rest and getting back into the …
Challenges and Dreams
I’ve seen a lot of people talking about the Ice Bucket Challenge for ALS lately. I’ve read theories about how people aren’t donating more money, they are just donating to …
Small Miracles
Recently I’ve been surrounded by small miracles. I see them so real and so up close that I often feel like my eyes hurt from being so close to God’s …