I have so many that ask what living with NKH is like.... It is this... Sunday’s used to be naps and rest... and in some ways it still...

The last month and a half has been so busy. We finished the run for the foundation, prepared for our trip to Florida for the week of two...

Drake turned one two days ago…. it really is hard to believe…. I normal do a huge first birthday for our children just because I love...

We are on our way to Duke to meet yet another neurologist. We left this morning around 5:30 am and hope to be home later this afternoon. ...

When God chose us to be Drake’s parents 10 months ago, we had no way of knowing what lied ahead…..All we knew was what little the...

Drake’s appointment went really well. We got to meet with the new neurologist and it was so, so nice. The story of how we got down here...

We are going to visit a Pediatric Neurologist in Charleston today. We had to postpone the last appointment because of our latest...

Right now we are trying to get base labs for Drake so that we can hopefully start our trial…end of next week. Drake is doing well, he...

Five days…. Five days is what we had this time….five days that we were able to enjoy the hope and the possibilities of a new treatment...

Drake is doing well these past few weeks. We are seeing some strong seizures right now that we are trying to understand. We did lower...