Annual Batten Conference

Every year we mark our calendars to attend the annual Batten disease conference. This is a five day period of time that we look forward to so much in order to regroup with our new extended family. It really is hard to put into words what this time means to us. 

It’s a time for joy for seeing all the families that we love so much. It’s a time for sadness as we see the children that we’ve seen the past few years before.  Some of those children have declined and some of them are no longer with us. We also met so many new families, which means a tough road for so many more. It’s a time for reflection and realizing what the future holds for Nathan. And right now it’s a time for hope for a new clinical trial that is in the works that we pray Nathan can be a part of.

This year we gathered in Pittsburgh, which was an amazingly beautiful city. Nathan did amazing on the flights, he was calm and well behaved, which always relieves a lot of the anxiety I have.

As soon as you walk in the door to the hotel you’re always greeted by familiar faces that you just can’t wait to hug on. This year’s conference was much different than our first year. Our first year we walked around confused and searching for any information we possibly could. This year was much more about the reconnection between friends. For both Jay and I as well as Nathan. We got in front of the researchers, the scientist, the doctors and everyone we possibly could to learn as much as we can about the upcoming trial. It does look like the trial will start in early 2018. At this time we do not have any other information regarding the criteria that will need to be met in order to be enrolled in the trial. We do not know how many kids they will accept into the trial. This is a very scary time for us as of course we want Nathan to be accepted into the trial but we also know that every other parent out there once their child accepted as well. We all want to save our children.

We were able to go in a day early and stay a day late and spend some time with some dear friends of ours. Next year the conference will be in Nashville and we look forward to reconnecting with everybody once again.

Stacey